Life In Action, Sept-Oct 2011 by United Spinal Association

Solutions

Dealing with Dealer Monopolies

Threads

Wheel-Friendly Winter Coats

Access

Staying Safe: Emergency Preparedness Self-Defense Techniques Projecting Confidence

Recreational Vehicles

Travel

Galapagos Islands

Dating

First Dates

SEPTEMBER-OCTOBER 2011 www.spinalcord.org

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Contact us today for a FREE sample pack! www.lofric.us • 877-4-LOFRIC 1.Waller L, Jonsson O, Norlén L, Sullivan L. Clean intermittent catheterization in spinal cord injury patients: long-term followup of a hydrophilic low friction technique. J Urol. 1995;153(2):345-348.

Life in Action is the membership publication of National Spinal Cord Injury Association, a program of United Spinal Association. Our mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D). SEPTEMBER/OCTOBER 2011 / VOL. 1 / ISSUE 2

Membership Benefit Highlights

EDITORIAL

Member benefits are continually being updated, so stay tuned for more. Current highlights include:

Editor Ian Ruder 718.803.3782, ext. 7224 / iruder@unitedspinal.org

• new Member pricing on Spinal Network: The Total Wheelchair Resource Book. Spinal Network is the essential resource for making important life choices after spinal injury, multiple sclerosis, ALS and other conditions. Through the eyes of survivors who have paved the way, this informationpacked book explores options in health, technology, attendant services, employment, travel, sports, relationships, sexuality, parenting and much more. Members pay only $19.95 and shipping is free (regular price is $29.95 plus $10 shipping). Call toll-free 888.850.0344, ext. 209, and mention that you are a member.

Editorial Director Jean Dobbs

MS Life Editor Josie Byzek 718.803.3782, ext. 7226 / jbyzek@unitedspinal.org Web Editor & Staff Writer Tom Scott 718.803.3782, ext. 7223 / tscott@unitedspinal.org

ADVERTISING

SVP of Marketing & Communications Jeff Leonard VP of Sales Amy Blackmore Account Executive Steve Max 800.404.2898, ext. 7254 / smax@unitedspinal.org Account Executive Megan Lee 800.404.2898, ext. 7253 / mlee@unitedspinal.org Ad Materials Deanna Hiller 800.404.2898, ext. 7258 / dhiller@unitedspinal.org

MEMBER SERVICES

SVP of Membership and Chapter Services K. Eric Larson (voice) 800.962.9629 (fax) 866.387.2196 membership@spinalcord.org

CIRCULATION

Circulation Manager Kim Brennan

For change of address, please contact Member Services.

OFFICERS

Chairman of the Board Lex Frieden Vice Chairman Denise A. McQuade Secretary Michael B. Kinne Treasurer Janeen Earwood President & CEO Paul J. Tobin

DIRECTORS

Marty Ball, Tom Cooke, David C. Cooper, Carmen DiGiovine, PhD, Janeen Earwood, David Estrada, Esq., Chris Fossel, Gretchen A. Fox, OTR, Lex Frieden, Andy Hicks, Michael B. Kinne, Michele A. Leahy, Samuel Lin, MD, PhD, Patrick W. Maher, Denise A. McQuade, Donna L. Messinger, Terence J. Moakley, Christine Moyle, Ronnie E. Raymond, Edmund J. Rowan, Laura G. Schwanger, Paul J. Tobin (Ex-Officio), Martin Young, Leonard F. Zandrow, Esq. © 2011 United Spinal Association. LIFE IN ACTION is published bimonthly (Jan/Feb, Mar/Apr, May/ Jun, Jul/Aug, Sep/Oct and Nov/Dec) by United Spinal Association, 75-20 Astoria Boulevard, East Elmhurst, NY 11370. Standard class postage is paid in Lebanon Junction, KY. POSTMASTER: Send address changes to United Spinal Association, Membership Department, 7520 Astoria Boulevard, East Elmhurst, NY 11370. Subscription rates: Domestic: $20, Foreign: $55 (U.S. funds drawn on a U.S. bank).

• Life in Action, our bimonthly member publication. We’ll work hard to deliver on our tagline’s promise to help you “Adapt/Connect/Achieve” by offering you unique ways to interact with the larger SCI/D community and to share vital information about successful everyday life with a disability. Mailed free to U.S. addresses. • Connections to Chapters and Peer Support. Whether you joined our community as a member of National Spinal Cord Injury Association or of United Spinal Association, you now have access to more than 60 NSCIA chapters and support groups nationwide. See pages 9-12 for a list of chapters and support groups, or visit www.spinalcord.org or call 800.962.9629 for the latest additions. • Priority access to Spinal Cord Central. We do our best to answer everyone’s questions quickly, but if you let us know you’re a member, we’ll move you to the top of the list! • Discount at Able to Travel, our in-house travel agency, where you’ll work with a travel agent

knowledgeable about the mobility and access issues that can arise during a trip. Members pay only $25 per person!

Individual membership is free and open to people with spinal cord injuries or disorders, family members, caregivers and professionals. Learn more or join at www.spinalcord.org, or call 800.962.9629. DIRECT SERVICE OFFICES INFORMATION AND REFERRAL

Spinal Cord Central (voice) 800.962.9629 (fax) 866.387.2196 help@spinalcordcentral.org www.spinalcordcentral.org

WHEELCHAIR MEDIC Fort Totten, NY 718.352.1623 Castle Point, NY 845.831.2000, ext. 5394 www.wheelchairmedic.com

CONGRESSIONAL LIAISON OFFICE Washington, DC 202.556.2076

ABLE TO TRAVEL

a program of United Spinal Association

888.211.3635 www.abletotravel.org

VETERANS SERVICE OFFICES M-F 8:30 a.m. to 4:30 p.m. or as noted.

Buffalo, NY 716.857.3338 or 800.807.0191 East Orange, NJ A service ofﬁcer will be at the East Orange VAMC on Thursday afternoons Newark, NJ 973.297.3387 or 800.807.0192 Wednesday 8:30 a.m. to 4:30 p.m. New York, NY 212.807.3163 or 800.807.0192 Philadelphia, PA 215.381.3037 or 800.807.0190 Naples, FL 239.455.6488 www.vetsfirst.org

SEPTEMBER/OCTOBER 2011 • LIFE IN ACTION

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LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

[contents]

Editor’s Note

Photo by Daniel Oz

wake-up call Ian Ruder

Cover Photo by Daniel Oz

“D

on’t you worry about your safety being out in the chair by yourself?” I wouldn’t classify myself as a big risk taker or someone who likes to live dangerously, so whenever the question comes up, I’m always a little taken aback. Honestly, on the list of my daily concerns, my physical safety probably falls somewhere below my health, my work, my family and how well my fantasy sports teams are performing. That said, I do get why people ask. Having a spinal cord injury or disorder adds a whole new set of things you have to consider and prepare for. Whether it’s new ways to physically defend yourself, extra steps to respond to or prepare for a natural disaster, or simply finding a good winter coat that works on wheels, the reality is having a spinal cord injury or disorder can complicate your efforts to be safe in a number of ways. In light of that, our second issue of Life in Action focuses on sharing stories, tips and resources to help you better prepare for whatever dangers may come your way. As we were putting this issue together, I often found myself thinking how I would respond to some of the scenarios we’re discussing, and I realized I wasn’t as prepared as I probably should be. After 13 years in a chair, I guess I just stopped thinking about some of the key differences that come with living on four wheels. If you’re at all like me, hopefully this issue will help you think through some important, and possibly life-saving, ideas. If you are already living safely, hopefully this issue will still provide a few tips to help you feel even more prepared for emergencies. Either way, please send your thoughts (on safety or anything else) to me at lifeinaction@unitedspinal.org. And don’t neglect your fantasy football teams.

Projecting confidence: Page 14

STAYING SAFE

SOLUTIONS

14 Confidence: Attitude and Action Being prepared makes you more confident. Being confident makes you more likely to do the things you want to do.

15 Self-Defense: Learning New Skills There are many schools of self-defense. Our intrepid reporter trys one course to see what it might offer wheelchair users.

18 Preparedness: Planning for Emergencies Hurricanes, floods, tornadoes — America saw it all this year. Members contribute their stories and tips for survival.

COMMUNITY 6 Letters to the Editor

9 Chapter News

6 Peer Perspective

9 Chapter Listings

7 United Spinal in Action

10 Members in Action

8 Note to Members

13 Family Matters

22 22 23 24 26 28 30 32 33 34 35 36 37 38

Ask Anything Spinal Cord Central Threads Access Dating/Relating TechGuide MS Life SCI Research Ask VetsFirst Travel Marketplace Business Members Hospital Members Last Laugh

[contributors]

Josie Byzek, editor of the MS Life pages, is a longtime disability rights advocate and the managing editor of New Mobility magazine. She has lived with MS since 1998 and likes to fish.

Rus Wooton, C6, is an artist and writer living in Colorado, paying his bills working as a comic book letterer, graphic designer and illustrator. For this issue, he illustrated “Scooters Away” on page 31.

Carla Steinbuchel retired from 30 years of nursing after a C5-8 injury in 2005. She has three daughters, two grandchildren, and a feisty miniature dachshund, Rebel. Her story begins on page 18.

Craig Fabian, vice president of the Spinal Cord Injury Association of Virginia and a C5 quad, is active in promoting emergency preparedness for people with disabilities. See his advice on page 21.

SEPTEMBER/OCTOBER 2011 • LIFE IN ACTION

[community]

Letters

Peer Perspective

Required Uniform

TechGuide

All-Terrain Wheelchairs

Threads

Jeans that Work

Family

Emotional Rescue

Access

Man Caves

Community

Successful Fundraisers

I just received my first copy of Life In Action. I first want to compliment you very highly on the quality of your publication. Thank you for the depth and variety of the information and assistance it contains. Secondly, I would like to inquire about the availability of the T-shirt with the handicapped symbol that says “In it for the Parking,” mentioned in Family Matters in the July/ August issue. I would very much like to know where/how I might purchase that shirt. I would appreciate any information you might be able to provide — that shirt Healthy Living: Recreation on Wheels Seated Workouts should be required Finding Peace uniform for us “wheelies.” Dennis Haig Glendale, California (Writer Jennifer Bridgman responds: I can no longer find the exact T-shirt that I bought online, but both Cafe Press (http://bit. ly/ot5lNg) and Zazzle (http://bit.ly/pt6p5G) carry a few similar styles. I have purchased all sorts of gifts on both Zazzle and Cafe Press. When they don’t have exactly what I’m looking for, I just create my own custom product using their online graphic designer program — it’s simple enough for anyone to use. Hope this helps!) JULY-AUGUST 2011 www.spinalcord.org

J U LY / A U G U S T 2 0 1 1 • L I F E I N A C T I O N

A Different Experience I just read the article “Swimming with Dolphins” in the July/August Life in Action. I was shocked at the problems that Cathy Riechers had, not only with the dolphin center, but also with Royal Caribbean Cruise Lines. I am a T10 para resulting from MS, and my wife and I have taken a cruise on Royal Caribbean. I had no problems booking any excursions. The only problem I encountered was when I booked a scuba diving excursion. After showing my card (I’m a certified diver) there were no problems. In fact, on the dive boat, the people and crew were most helpful, and I had two wonderful dives. In 2008 I booked a trip to Nassau for the sole 6

purpose of my wife swimming with dolphins — like Cathy, it was her dream. Again, I had no problems, and we did the deep water experience (we were in about 20 feet of water). It was a challenge at first, learning how to cope/stay afloat while holding an under water scooter, but I managed just fine, and I also had quite an experience. At this point I feel it’s only fair to say that I water ski and scuba dive, and I was a former Paralympic swimmer. However, that should have no bearing on a business letting a disabled person partake in anything. I hope in the future people will be less judgmental and disabled people more assertive. Ron Curll Greenville, North Carolina

Free Tai Chi DVD? I’d like to thank you and the folks at United Spinal for the great job you did in putting out the Life In Action publication. I received my first issue and was really impressed with the useful information found inside. I did, however, have a problem trying to follow up on your article entitled “Yoga and Fitness DVDs.” Specifically the article mentioned an email contact for “Tai Chi Mini Sets,” which I tried to send and got a failure notice. I’m hoping you can help me find the correct email address, or another way to receive information on Tai Chi from a wheelchair. Thanks in advance for any assistance you can provide! Bob Gearing Woodstock, Georgia (Editor: The email listed in the magazine should work — Paul Carufel at Santa Clara Valley Medical Center reports that he filled 20 requests for free DVDs within the first week of publication. If you continue to have trouble, send Life in Action your address, and we will gladly pass on the request. The other DVDs in the article, as well as additional Tai Chi titles, are available on Amazon.com.)

Thanks for MS Coverage Your article “Yoga for MS Relief” was very interesting. I like that you’ve included quite a few articles that are informative and helpful for those with MS. Thank you. Susan Hinrichs Muncie, Indiana

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

Q. I want to help out more around the house, but I haven’t found a good way to move heavy things for my wife. They either slide off my lap, or I tweak my neck trying to switch off on wheeling hands while holding something bulky. Any ideas? — Rayland Penn, Fort Smith, Ark.

[Florida Member]

Marty Ball Responds Years back I invented a small clamp that attaches to the down tube of your chair above your footplate. It has a 7-inch lever that flips down and sticks straight out. Put one on each tube, flip them down and you have a carrying platform. I take out the trash and move large UPS packages. I moved a barbecue through the house to the back patio. I carry furniture, luggage, all kinds of stuff. Why not do what you can? I love it when skycaps ask me if I need help with my luggage, and I get to tell them I’m carrying my ablebodied friend’s suitcase. TiLite sells the only metal set available and does offer several sizes of clamps to attach the levers to the chair (www.tilite.com). Quickie has a budget-conscious version, called “Caddys,” that are plastic and will flex when heavy loads are on board. They are also slightly shorter in length (www.sunrise medical.com). Polio para Marty Ball is a member of United Spinal’s board of directors and vice president of sales for TiLite. If you have experience that can help your peers, share it! For an upcoming issue, Samantha Will asks: How do people handle displaying pre-injury photos of themselves? Sometimes I think it upsets my friends (and sometimes me), but I don’t want to deny a huge part of my life. Please send responses to lifeinaction@ unitedspinal.org. Or send us your question, and we’ll publish it — and the responses it draws. You may also write to us at: Life in Action United Spinal Association 75-20 Astoria Blvd. East Elmhurst, NY 11370

United Spinal in Action United Spinal Association’s membership services division, National Spinal Cord Injury Association, has launched its New Beginning program. As its first project, NSCIA will distribute custom backpacks to people who are newly-injured or newlydiagnosed as they leave hospitals and rehabilitation facilities. The backpacks are filled with relevant information and resources on mobility and medical equipment, disability benefits, accessible housing, leisure and travel, healthcare and much more. “Most people are universally unprepared at first to live with a life-changing injury or disorder. The sooner we can reach these individuals and their family members and caregivers, the quicker they will be able to adapt,” says K. Eric Larson, senior vice president for membership and chapter services at United Spinal Association. The backpack is the first element of a larger New Beginning initiative that will provide a wide array of tools and resources for better living with SCI/D. To learn more about New Beginning, or how to sponsor a backpack for a newly-injured or diagnosed person, please visit www.spinalcord. org, or call 800.962.9629.

The New Beginning backpack, which can hang on the back of a wheelchair, contains information, resources, product samples, a copy of Life in Action and more. A $50 donation to NSCIA sponsors a pack for someone with a new injury — visit www.spinalcord.org for details.

Subway Access Victory United Spinal was one of three plaintiffs to win a key September decision that will compel the Port Authority of New York/New Jersey to make New York City’s Grove Street PATH Station accessible to wheelchair users and other people who cannot traverse stairways or escalators. PATH stands for Port Authority Trans-Hudson, a rapid transit rail line that carries 240,000 passengers per day. The order is the latest chapter in a six-year effort by United Spinal to have the Port Authority install elevators at Grove Street and comply with the Americans with Disabilities Act requirement that access for wheelchair users be included when an entrance to a rail station is constructed or altered. “This decision will open up transportation and employment opportunities in Jersey City’s growing hub for people with motor, respiratory and stamina disabilities that need elevators to use this station,” says James Weisman, senior vice president and general counsel for United Spinal.

Advocating for Access to Service Dogs United Spinal’s VetsFirst program (www.vetsfirst. org) has submitted congressional testimony in favor of the passage of two key pieces of legislation to protect the rights of veterans who use service dogs. The Veterans Dog Training Therapy Act (H.R. 198) would create a pilot program to determine whether veterans with post-deployment mental health concerns, such as post-traumatic stress disorder, could benefit by participating in the training of service dogs for fellow veterans. The Veterans Equal Treatment for Service Dogs Act (H.R. 1154) would ensure that all veterans with disabilities who use service dogs are able to access VA facilities. “In addition to performing tasks such as pulling a wheelchair or opening a door, these highly trained animals can also help break down barriers between veterans with disabilities and society. Service dogs also help many veterans reintegrate into civilian life,” says Heather Ansley, director of veterans policy at VetsFirst.

Lex Frieden Honored The Texas Governor’s Committee on People with Disabilities honored Lex Frieden, the chairman of United Spinal Association’s board, by renam-

Photo by Ahvi Spindell

Info-Rich Backpacks Launch New Beginning Program

Melissa and Donovan Jones returned to their third Independence Expo in Orlando, Fla., Sep. 23-24. They came looking for new technology, so Melissa could follow her creed: “Stay active to be independent.” To learn about other upcoming United Spinal events, please visit www.spinalcord.org/events.

ing its employment awards after him. Beginning in October, the “Lex Frieden Employment Awards” will be given to employers, entrepreneurs and professionals in the disability field for exemplary actions, methods and practices. “The advocacy efforts of Lex Frieden have led to many advances in the civil rights of people with disabilities,” says Paul J. Tobin, United Spinal’s president and CEO. “Yet employment among people with disabilities remains one of this community’s greatest challenges. It is fitting that the monumental challenges of increasing employment among people with disabilities should bear the name of someone who has successfully confronted so many challenges in the past.” Frieden was one of the architects of the Americans with Disabilities Act and is a leader in the independent living movement. He has used a wheelchair since an automobile accident while attending college at Oklahoma State University. As senior vice president of TIRR Memorial Hermann Hospital in Houston, Frieden currently directs their Independent Living Research Utilization program.

SEPTEMBER/OCTOBER 2011 • LIFE IN ACTION

community

Enabling

Romance

Note to Members

eople typically get involved in the SCI/D community and our issues for one of three

31–Nov. 2, 2011, at the Marriott World Center in Orlando, Fla. Chapter representatives

reasons: they have an injury or

from around the country

disorder, they know someone

will have a chance to meet

who does or they work in a re-

the entire Membership and

lated field, like healthcare or

Chapter Services team, as

rehabilitation services. I got in-

well as other key staff mem-

volved with spinal cord injury

bers from United Spinal.

and disability in the early 1990s

We will review resources

— not because of any personal

and services available to

experience, but because a client of mine asked me to share my professional skills (marketing communications and business management) as a volunteer with NSCIA’s Illinois chapter. But while I might have come to this community as an

chapters and members as

community first

Sex and relationships don’t end with disability, and Enabling Romance proves it. Written by a husband and wife team, one of whom has a disability, this book intelligently and honestly debunks the myth that disabled equals asexual. Dozens of people with disabilities share the details of their intimate relationships, creating an invaluable resource for people newly disabled or newly single with a disability.

$15.95

plus $3.00 S/H, US residents Canada $5 S/H, Foreign $9 S/H

888-850-0344, ext. 209

www.newmobility.com/bookstore.cfm Enabling Romance PO Box 220, Horsham, PA 19044 8

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

NSCIA and United Spinal Association, and how those

K. Eric Larson

match up with the priori-

SVP of Membership and Chapter Services

in conversations with me

outsider, it was the people I met

A Guide to Love, Sex, and Relationships for People with Disabilities (and the People who Care About Them)

a result of the merger of

in that first year and the impact that I was able to have working with our chapter in Illinois that truly stirred my passion. Over time that led to a complete career change and me refocusing my life personally and professionally. Less than a year later, two other volunteers and I climbed Mt. Rainier as part of a program we called Climb for a Cause to raise funds for NSCIA’s Illinois chapter and draw attention to the chapter’s injury prevention program. That initiative evolved into the creation of Moving Mountains, an outdoor adventure and empowerment program that the Illinois chapter (Spinal Cord Injury Association of Illinois) continues to hold annually. I know firsthand what a unique resource our local chapters and support groups are to us as an organization, and to you as members. Our chapters are not simply “field offices” or “fundraising arms” — they are true grassroots organizations, founded out of a passion to improve the quality of life for all Americans living with SCI/D. Chapters and support groups are vital components of NSCIA. While each NSCIA affiliate shares our overall mission, how they

ties identified by chapters and United Spinal CEO Paul Tobin earlier this year. The

workshop will also allow chapter leaders to share strategies and best practices with each other. We’ll close out with a session focused on identifying clear next steps for growing and moving forward, as well as new resources and supports to help chapter leaders in taking those steps. Whether you joined our ranks through NSCIA or United Spinal, you are now a member of the largest nonprofit membership-based organization dedicated to helping people living with SCI/D. You are part of a growing vibrant community, and have access to a wide array of resources. The opportunity to connect with one of NSCIA’s 60-plus local chapters and support groups is one of the most valuable of those resources. If you are not already connected with a local NSCIA chapter or support group, I strongly encourage you to reach out to one. And if there is not a chapter or support group convenient to you, bring that to our attention. Let us know what you think your community needs — and if you would like to help us meet that challenge.

serve their members is as unique as the people and regions they represent.

To find a chapter or support group near

That’s why I’m very excited about our

you, look over the next few pages, visit www.

current work with chapters and the Chapter

spinalcord.org, or contact us at 800.962.9629

Development Workshop we’re hosting Oct.

or membership@spinalcord.org.

Chapters and Support Groups

Chapter News

Support is at the heart of United Spinal’s Kids Sports Spectacular.

Photo by Ahvi Spindell

Expo Marks Kansas City Chapter’s Third Anniversary

ARIZONA SUPPORT GROUPS

DISTRICT OF COLUMBIA CHAPTER

East Valley Support Group (COMPASS) Phone: 602.241.1006 Contact: Pauline Staples Email: plstaples@msn.com

SCI Network of Metropolitan Washington, NSCIA Attn: SCIN, 14 Wolf Drive, Silver Spring, MD, 20904 Phone: 240.429.6141 Contact: Kimball Gray Email: kimballg@ecnv.org

Flagstaff Support Group Phone: 928.527.8567 Contact: Al White Grupo de apoyo en Español Gentiva Rehab Without Walls 7227 N 16th St #107, Phoenix Phone: 602.943.1012 Contact: Diane Prescott Support Group Phone: 623.209.0311 Contact: Gary Hershey SCI Women Support Group Banner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, AZ 85006 Phone: 602.239.3307 Contact: Jill Greenlee, CTRS CALIFORNIA CHAPTER WYNGS, NSCIA 7900 Nelson Rd., Panorama City, 91402 Phone: 818.267.3031 Contact: Michele Altamirano Website: www.wyngs.org Email: wyngs4sci@msn.com CALIFORNIA SUPPORT GROUPS Southern California SCI Support Group Casa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, CA 91769 Phone: 818.267.3031 Contact: Michele Altamirano, WYNGS Email: wyngs4sci@msn.com Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, CA 93715 Phone: 559.459.6000 Ext. 5783 Contact: Ray Greenberg Email: rgreenberg@communitymedical.org CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, CT 06492 Phone: 203.284.1045 Contact: Jeff Dion Website: www.sciact.org Email: nscia@sciact.org

FLORIDA SUPPORT GROUPS Peer Support Contact 313 Spider Lily Ln, Naples, FL 34119 Phone: 239.353.5894 Contact: Mindy Idaspe Email: scidconsultant@hotmail.com

The Greater Kansas City Spinal Cord Injury Association will be celebrating its third birthday in style on Oct. 22 when it holds its first Abilities Expo. The all-day event will be the biggest event the chapter has hosted since its Nov. 2008 inception, and it looks like it will have something for everyone. Linda Klaiber, the chapter president, says she is expecting more than 30 exhibitors, running the gamut from wheelchair manufacturers to recreation companies to medical suppliers. “We’re excited we’ve gotten so many different types of people and groups to participate,” she says. “It’s shaping up to be a very well-rounded

exhibit.” In addition to the exhibitors, the event will feature presentations by Canine Companions and a keynote speech by Ann Eubank, director of UsersFirst, a group that advocates for greater access to complex rehab equipment for people with disabilities. Her speech, entitled “Advocacy for all: Consumer driven change,” will provide an interactive look at how people with disabilities can advocate for changing the status quo. The expo is from 9 a.m. to 4 p.m. at the Sylvester Powell Community Center in Mission, Kan. For more information call 913.588.7815, or visit www.gkcscia.org.

Next issue: Houston members share the process of forming a new chapter.

Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, FL 32901 Phone: 321.984.4600 Contact: Ellen Lyons-Olski Email: ellen.lyons-olski@healthsouth.com Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, FL 32308 Phone: 850.656.4800 Contact: JoAnna Rodgers-Green

TechGuide eelchairs Terrain Wh All-

Threads

Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, FL 33601 Phone: 800.995.8544

n on Wh Recreatio rkouts Seated Wo ce Finding Pea

Work Jeans that

Family Rescue Emotional Access

Florida Rehab. and Sports Medicine 5165 Adanson St., Orlando, FL 32804 Phone: 407.823.2967 Contact: Robin Kohn Email: rkohn@mail.ucf.edu Phone : 407.623.1070 Contact: Carl Miller HealthSouth - Support Group 90 Clearwater Largo Rd., Largo, FL 33770 Phone: 727.588.1866 Contact Vicki Yasova

ing: Healthy Liv eels

Man Caves

Community s Fundraiser l Successfu

ST 2011 JULY-AUGU alcord.org1 www.spin N

J U LY /

AUGU

11 ST 20

TIO IN AC • LIFE

Like Us on Facebook! Join our growing Facebook community to share SCI/D resources, tips and encouragement. You’ll also learn about upcoming stories and how you can contribute your experience to the publication!

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GEORGIA SUPPORT GROUPS Columbus SCI Support Group Phone: 703.322.9039 Contact: Ramona Cost Email: rvcost@mchsi.com Central Central GA Rehab Hospital 3351 Northside Dr., Macon, GA 31210 Phone: 800.491.3550 Ext. 643 Contact: Kathy Combs

SEPTEMBER/OCTOBER 2011 • LIFE IN ACTION

TechGuide

community

Members in Action [Kentucky Member] Cindy Norton: Racing to Help the SCI Community

ack in 1997 Cindy Norton was happily working as a dental hygienist in rural Kentucky, and spinal cord injury was probably the last thing on her mind. That all changed on a hot July day when her son

something we wanted to continue to do as a group,” she says. “I have to give credit to a lot of people who said this is really important, we can’t let this go.” Friends of Michael started off by raising money to buy a van for Brent and, after quickly accomplishing that goal, expanded its purview. Brent passed away in 2007 of complications from a perforated ulcer, but Norton says his positive spirit lives on with his friends and family and, she hopes, through the group’s achievements. Over the last 13 years the group has raised money for a variety of SCI-related causes, including: vans, ramps and other adaptive items; scholarships for local high school students pursuing careers in healthcare; a resource room at Frazier Rehab in Louisville; and an accessible playground in their rural community of Campbellsburg, Ky. Norton is still a board member with Friends for Michael, but stepped down as Cindy Norton, right, works with IndyCar team president to tackle a new SCI challenge. For owner, Sam Schmidt, center, to organize “Day the last three years Norton has been coordiat the Races” events for his foundation. nating the Day at the Races program for the Sam Schmidt Paralysis Foundation. Former Chuck’s best friend, Michael Brent, was IndyCar racer and current team owner, Sam injured in a freak rollover car crash on his Schmidt, founded SSPF with the goal of findway home from work. Little could Norton ing a cure for SCI. Schmidt is a C3-4 quadhave known that what started with a bake riplegic as a result of a crash in Jan. 2000. sale and a car wash to raise funds for Brent The Day at the Races program offers would end up changing the direction of her people with spinal cord injuries and disorlife. “Never at all would I have dreamed ders a rare opportunity what I’d be doing to spend an up-close“A lot of people don’t right now,” she says. day at the “I literally figured realize what they can do and-personal track. Each racing season, we’d raise money for until they get out Norton arranges about a a couple of years and and do it.” dozen events that cointhen, as a lot of small cide with major IndyCar organizations do, we’d go away. Instead it races. She then coordinates with local hosjust continued to grow.” Over the past 14 pitals and rehab centers to bring up to 60 years Norton has assembled a legacy of acpeople, usually half with SCI/D, to the track. complishments that has improved the qualAt the track, participants get to meet their ity of life for hundreds of people with SCI/D favorite drivers and see behind the scenes in Kentucky and across the nation. of one of America’s most popular sports. Norton’s involvement began almost as Norton says the goal is empowering peosoon as Brent was injured. She remembers ple with SCI/D to pursue their dreams. “A going to the hospital and listening to the lot of them have written back and said, ‘This litany of costs that Brent’s family could has totally changed my outlook on what I expect as he progressed. With some nudgcan do,’” she says. “A lot of them thought ing from her daughter, she agreed to start they would never be able to come out and fundraising. The bake sale and car wash do what they were able to do at a race track led to a raffle, which led to a golf scramble, — to get around the race track, get up and which led to a 5K. Soon, Norton was solicitdown the field, and have that kind of accesing friends’ help and soon after Friends for sibility — a lot of people don’t realize what Michael, Inc. was born. Norton assumed the presidency. “We just decided that it was they can do until they get out and do it.”

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

ILLINOIS CHAPTER SCI Association of Illinois 1032 South LaGrange Road, LaGrange, IL 60525 Phone: 708.352.6223 Contact: Mercedes Rauen Website: www.sci-illinois.org Email: SCIInjury@aol.com INDIANA SUPPORT GROUPS Calumet Region Support Group 2109 Cleveland St., Gary, IN 46406 Phone: 219.944.8037 Contact: Rita Renae Jackson Email: rjackson@ci.gary.in.us Northwest Indiana SCI Support Group 1052 Joliet Rd, Valparaiso, IN 46385 Phone: 219.531.0055 Contact: Joe White Email: heyjoewhite@comcast.net IOWA CHAPTER SCI Association of Iowa 3936 NW Urbandale Dr, Urbandale, IA 50322 Phone: 515.554.9759 Contact: Angie Plager Website: www.spinalcordiowa.org Email: SCIAofIowa@hotmail.com KANSAS CHAPTER Greater Kansas City SCIA P.O. Box 8826, Kansas City, MO 64114 Phone: 913.491.5667 Contact: Linda Klaiber Website: www.spinalcord.org/ kansascity Email: gkcscia@gmail.com KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, KY 40202 Phone: 502.588.8574 Contact: David Allgood, President Website: www.derbycityspinalcord.org Email: david.allgood@amerihealthmercy.org KENTUCKY SUPPORT GROUP Friends with Spinal Cord Injuries 3785 Hwy 95, Benton, KY, 42025 Phone: 270.205.5675 Contact: Anndrea Coffman Email: whelygurl@yahoo.com LOUISIANA CHAPTER Louisiana Disability Alliance, NSCIA P.O. Box 86632, Baton Rouge, LA 70817 Phone: 225.436.4519 Contact: Glenn Gaudet MARYLAND SUPPORT GROUP Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, MD 21207 Phone: 410.448.6307

Contact: Jenny Johnson Website: www.kernan.org/kernan/ MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, MA 01801 Phone: 781.933.8666 Fax: 781.933.0043 Contact: Kevin Gibson Website: www.sciboston.com Email: sciboston@aol.com MASSACHUSETTS SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, MA Phone: 781.933.8666 Website: www.sciboston.com/ support.htm Spaulding Support/Discussion Group 125 Nashua Street, Boston, MA Phone: 617.573.2081 Phone: 857.222.5123 Contact: Betsy Pillsbury Website: sciboston.com/support.htm Whittier Westborough Support Group 150 Flanders Road, Westborough, MA Phone: 508.871.2000 Ext. 2165 Contact: Deb Website: sciboston.com/support.htm MICHIGAN CHAPTER MSCIA 1938 Woodslee Drive, Troy, MI 48083 Phone: 248.288.2270 Contact: Stacey Murphy Email: smurphy@americaremedical. com MISSISSIPPI SUPPORT GROUP Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, MS 39532 Phone: 601.969.4009 Contact: Michelle Bahret Website: www.lifeofms.com Email: mbahret@yahoo.com MISSOURI CHAPTER Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: 913.491.5667 Contact: Linda Klaiber Website: www.spinalcord.org/ kansascity Email: gkcscia@gmail.com MISSOURI SUPPORT GROUP Southwest CIL 2864 S. Nettleson Ave., Springfield, MO 65807 Phone: 417.886.1188 Contact: Marion Trimble

Website: www.swcil.org Email: mtrimble@swcil.org

Email: bartoszt@upstate.edu Phone: 315.247.0927 Contact: Maria Froio Email: scin4cny@yahoo.com

NEW HAMPSHIRE CHAPTER New Hampshire Chapter, NSCIA 21 Chenell Drive, Concord, NH 03301 Phone: 603.225.3304 Contact: Debbie Krider Email: debbie@gsil.org Website: www.gsil.org/nhnscia.htm

Long Island Spinal Cord Injury Phone: 516.221.9255 Contact: Anthony Testaverde Website: www.testaverdefund.org Email: info@testaverdefund.org NORTH CAROLINA CHAPTER

NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: 585.275.6097 Contact: Karen Genett Email: rochesternscia@yahoo.com Phone: 585.275.6347 Contact: Amy Scaramuzzino Email: ascaramu@frontiernet.net New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, NY 10029 Phone: 212.659.9369 Contact: James Cesario or John Moynihan Website: www.nycspinal.org Email: NYCspinal@NYCspinal.org NEW YORK SUPPORT GROUPS SCI Network of Central New York ARISE, 635 James Street, Syracuse, NY 13203 Phone: 315.464.2337 Contact: Tammy Bartoszek

NCSCIA 3701 Wake Forest Rd., Raleigh, NC 27609 Phone: 919.350.4172 Contact: Deborah Myers Email: dmyers8@triad.rr.com Contact: Karen Vasquez Email: kvasquez@wakemed.org OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 13745 Archbold Whitehouse Rd., Swanton, OH 43558 Phone: 419.875.4029 Contact: Hank Burney, President Website: www.nwonscia.org Email: bjbiii77@windstream.net Phone: 419.531.6401 Contact: Becky Gay Email: beckkevn1@aol.com Northeast Ohio Chapter, NSCIA PO Box 934, Chesterland, OH 44026 Phone: 440.442.5550 Contact: Jeff Schiemann Email: jjscpajd@aol.com

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Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, OH 44484 Phone: 330.841.3856 Contact: Rebecca Lebron Email: rlebron@forumhealth.org Phone: 330.889.2158 Contact: Rick Ackerman Email: bird196@aol.com

SCSCIA 2935 Colonial Drive, Columbia, SC 29203 Phone: 866.445.5509 (toll free) Phone: 803.252.2198 Contact: Diane Epperly, Executive Director Email: scscia@att.net Contact: Rafe Ellisor, Chairman Email: rafe.ellisor@healthsouth.com Website: www.scspinalcord.org

PENNSYLVANIA SUPPORT GROUPS Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, PA 16602 Phone: 800.873.4220 Greater Pittsburgh Rehab Hospital 2380 McGinley Rd., Monroeville, PA 15146 Phone: 800.695.4774 Contact: Kristy Nauman Email: kristy.nauman@healthsouth.com Delaware Valley SCIA 2610 Belmont Ave., Philadelphia, PA 19131 Phone: 215.477.4946 Contact: Bruce McElrath Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, PA 19102 Phone: 215.587.3174 Contact: Marie Protesto Website: www.mageepeers.org Rehabilitation Hospital of York 1850 Normandie Dr., York, PA 17404 Phone: 800.752.9675 Ext. 720 Phone: 717.767.6941 Contact: Tammy Derk Email: tammy.derk@healthsouth.com

SOUTH CAROLINA SUPPORT GROUPS Chester Area SCI Support Group Purity Presbyterian Church on 135 Wylie Street, Chester, Chester, SC, Phone: 803.385.2270 Contact: Bill McDonough Email: billandlee@truvista.net Conway Peer Support Group New Horizons Center, 1021 Third Ave., Conway, SC Phone: 843.488.1309 Contact: Ellen Leftwich Email: leftwich@sccoast.net Florence, SC Area SCI Support Group HealthSouth Rehabilitation Hospital 900 East Cheves Street, Florence, SC Phone: 843.679.9932 Contact: Ronnie McFadden Email: ronnielmc@yahoo.com Greenwood Peer Support Group Burton Center, 2605 Highway 72/221 East, Greenwood, SC Phone: 864.942.7124 Contact: Kristy Lawson Email: klawson@burtoncenter.org

Midlands Peer Support Group 2935 Colonial Drive, Columbia, SC Contact: Diane Epperly Phone: 803.252.2198 or 866.445.5509 Email: scscia@att.net Orangeburg, SC Area SCI Support Group 3000 St. Matthews Road, Orangeburg, SC Phone: 803.829.2043 Contact: Rebecca Felder Email: Rebecca.felder@yahoo.com Spartanburg, SC Area SCI Support Group 101 St. Matthews Lane, Spartanburg, SC Phone: 864.595.1947 Contact: Dot Colson Email: DColson@Dennys.com Trident Peer Support Group 1812 Sam Rittenberg Blvd., Charleston, SC Phone: 843.792.2605 Contact: Richard Aust Email: aust@musc.com TENNESSEE CHAPTER Tennessee Spinal Cord Injury Association 105 Ballentrae Dr., Hendersonville, TN 37075 Phone: 615.947.6204 Contact: Cheryl Stowe, Executive Director Email: cherlystowe@yahoo.com Website: www.standuptn.com TEXAS CHAPTER Rio Grande Chapter Highlands Regional Rehab. Hospital 1395 George Dieter, El Paso, TX 79936 Phone: 915.298.7241 Contact: Sukie Armendariz Contact: Ron Prieto Email: riograndenscia@aol.com

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LIFE IN ACTION â&#x20AC;˘ SEPTEMBER/OCTOBER 2011

VIRGINIA CHAPTER Spinal Cord Injury Association of Virginia P.O. Box 8326 Richmond, VA 23226 Phone: 804.726.4990 Fax: 888.752.7857 Contact: Steve Fetrow Email: steve.fetrow@sciava.org Website: www.sciava.org WASHINGTON SUPPORT GROUP SCI Forum University of Washington Medical Center Cafeteria Conference Room B/C 1959 NE Pacific St., Seattle, WA 98195 Phone: 206.685.3999 Contact: Cynthia Salzman Email: Csalzman@u.washington.edu WEST VIRGINIA SUPPORT GROUP West Virginia Mountaineer Support Group P.O. Box 1004, Institute, WV 25112 Phone: 304.766.4751 Contact: Steve Hill Email: steveh@mail.drs.state.wv.us WISCONSIN CHAPTER NSCIA Southeastern Wisconsin 1545 S. Layton Blvd., Rm. 320, Milwaukee, WI 53215 Phone: 414.384.4022 Contact: NSCIA-SWC Office Email: office@spinalcordwi.org Contact: John Dziewa Email: president@spinalcordwi.org Website: www.spinalcordwi.org

Family Matters taking back the road Burt Sanden

he story of my wife’s spinal cord injury and our life together afterwards begins, of course, with the day of the accident: that moment where the future threatened to be so different from the present that it seemed not to exist. Being an athlete had always been such a dominant part of Beth’s identity that when I saw her lying on the gurney before surgery, a part of me couldn’t help but see it as a coffin. But I told Beth we’d find a new normal. I didn’t know what it would be, but I knew we’d get there. Almost 10 years later, I still think “new normal” is a good term. The old normal ended when Beth took a head-over-heels fall while bike racing. She shattered the T6-7 vertebrae and spent the next three months in the hospital adjusting to incomplete paraplegia. On the way to finding our new normal we went through plenty that was anything but normal. The core Beth hadn’t changed, but in the beginning she was at war with her new body and the constraints it placed on her. It seemed as though the more I helped, the bloodier the battle to rediscover “normal” became. I couldn’t see it then. Beth needed my help and often appreciated it, but every time I’d do something for her that she used to do herself the act was, for her, a surrender of independence. The reduced control of her own life was at least as upsetting, if not more so, than the lack of mobility causing it. I had to learn when and how to help. It’s an art I fail at regularly, but I keep at it. What paved the road to adjustment was her love of sports. The first venture was a trip to the community pool, a real hangout for serious swimmers where Beth had logged countless laps training for Ironman competitions. The place has a quiet yet strong camaraderie, and a lot of familiar faces were there to encourage her. The pool’s access lift wasn’t working, so her old Ironman training buddy said, “She may not be able to use her legs but she’s got arms, so make her use them.” We tossed her in. It was slow going at first, but eventually Beth developed a new sense of balance and rhythm in the water. After that, there was no looking back. Beth was back in the game. The process of setting, attaining and looking forward to a new goal was hers again. Next she received a grant from Challenged Athletes Foundation for a handcycle, and took back the road. Now she could compete in marathons and triathlons, using her

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I had to learn when and how to help. It’s an art I fail at regularly, but I keep at it. handcycle for both the run and bike events. Today Beth has recovered mobility without sensation on her right side. She has learned to “hike and swing” on her left side using a leg brace and cane, enabling her to walk. And now that Beth’s tasted big-city marathons on a handcycle, the “budget conscious” dream vacations we used to take have been replaced by excursions to participate in marathons all around the world. She’s always scouting marathons where they’ll give her a chance with her handcycle. She loved the Boston Marathon and recently became the first person with SCI to complete the Great Wall of China Marathon. Beth has already registered for the 2012 Boston Marathon and is looking at competing in South Africa. She recently became a mentor for the Challenged Athletes Foundation and hopes to continue racing and opening doors for others with SCI. Wherever she goes, I’ll be along for the ride. Send your “Family Matters” essay (600 words by or about a family member) to editor Ian Ruder at lifeinaction@unitedspinal.org. SEPTEMBER/OCTOBER 2011 • LIFE IN ACTION

[coverstory]

Being Prepared The Power of Confidence

l i f e i n a c t i o n • S E P TE M B E R / OCTO B E R 2 0 1 1

Photo by Daniel Oz

ooking tough and being in a wheelchair aren’t exactly synonymous in our culture, but as C7/T1 Kate Matelan shows (both on our cover and in her writing) they don’t have to be mutually exclusive. When we started tossing around the idea of having a writer seek out the secrets of self-defense for our safety-themed issue, Kate was all in. “I thought for sure it was going to be super-difficult to get the upper hand when physically defending myself in my chair,” she says, “but it turned out that being in a chair actually had some advantages.” Her article on the next page the details her transformation into a fearless chair ninja, and the tricks she learned that might help you better defend yourself, as well. The devastating tornadoes that struck Alabama and much of the Midwest last spring provided a very different sort of education for Carla Steinbuchel, C5-8. Steinbuchel’s house and livelihood were spared, but as she relates in her story (page 18), much of the confidence she had enjoyed was shattered. “I did not realize how unprepared I was until after the tornadoes,” she says. The key to Steinbuchel and Matelan building — or rebuilding — confidence proved to be the same: preparation. For Steinbuchel, preparation meant assembling an emergency kit and sharing her contact information with friends and emergency workers. For Matelan, it meant learning how to handle threats to her personal safety. “I think the biggest difference from how I was before taking the class, to how I am now, is that I am more aware of what could happen and more confident that I can take on whatever happens,” says Matelan. Confidence is a huge part of success in life, especially for life in a chair. Sometimes obstacles that seem dangerous or threatening can be mastered with the simplest knowledge. By sharing our collective wisdom we can help each other live safer lives and feel empowered to do more.

1 Being aware of your surroundings and the people you encounter is essential for staying safe. Here, author Kate Matelan and her selfdefense instructor act out a scenario in which he watches her wheeling to her car.

Photos by Michael McNett

A Lesson in Self-Defense Just because you’re in a chair doesn’t mean you have to be a victim. With the proper self-defense know-how, you may even be able to use your attacker’s perception of your vulnerability to your advantage.

Kate approaches her vehicle with keys in hand to avoid fumbling at the door, but her “attacker” still sees her as vulnerable.

By Kate Matelan

ou get out of your car late at night. You grab your dinner leftovers from the backseat and slowly cruise into your apartment complex. At first, all you hear are the crickets chirping, but then — faint footsteps behind you, slowly getting louder and louder. You can’t help but wonder if it’s someone who sees you as an easy target in your wheelchair, and your adrenaline starts to pump. The apartment front door isn’t too far away, but what would you do if those footsteps were meant for you? More importantly, what can you do? I recently set out to answer this question. As a C7/T1 quad and a fairly petite female, I don’t exactly look menacing. Yet you’ll find me in and out of major cities, hitting up the nightlife and using the pavement as my mode of transport. Of course I’m usually with friends and in safer areas, but there are

times when it’s just me and my chair. It got me thinking: How safe am I? And more importantly, how could I be safer? Properly defending myself wasn’t something I was prepared to do, but after some firsthand self-defense research at Bethlehem Martial Arts Academy in Bethlehem, Pa., I’m now a chair user who’s ready to handle sticky situations.

Project Confidence, Practice Vigilance Staying safe begins with knowing yourself and knowing your environment. According to John Gallagher and Dave Cuddy — my certified World Tang Soo Do Association instructors, fifth- and third-degree black belts respectively — self-defense is 90 percent mental and 10 percent physical. Your own mental sureness and awareness will be your greatest protection from harm.

“Rolling with attitude and projecting strong self-confidence is the mindset you need,” says Cuddy. To seem like less of a target, keep your body tall in your chair and your head glued straight ahead to exude your ’tude. Making smart decisions and keeping tabs on your surroundings will also contribute to your safety. If you know a particular area is risky late at night, your best bet is to avoid it altogether. But let’s say you need to buy groceries when it’s pitch black outside. In this case, think through what could occur when you roll to your car, visualize the possible scenarios, and determine how you would react. Think of places an assailant could hide and follow the safest, most well-lit route, with your keys in hand. While this might feel paranoid at first, it becomes automatic in time. For example, I enter on the passenger side of my small SUV, so there’s a chance

S E P TE M B E R / OCTO B E R 2 0 1 1 • l i f e i n a c t i o n

Kate realizes she needs to angle her chair for a confrontation.

Ways to Stay Safe • Have your keys in hand before you reach your car. Fishing around in your purse or on your wheelchair for your keys can make you a target. • Keep your cell phone charged and with you at all times. • Try not to wheel or cycle alone at night. If out by yourself, leave those headphones at home. • If you think you’re being followed, roll faster and cross the street. Try to head for a public place with other people. • Keep moving and talk at a distance when someone stops their car and asks for directions. Don’t move closer to their vehicle. • Be alert at the ATM. Only use ATMs in plain view and be aware of people in front of and behind you. • Mix up your route home every now and again. Most attacks are planned beforehand, so you want to avoid sticking to a habitual route and time. Adapted from the resource, S.M.A.R.T. Self-Defense by Kevin J. Robinson. 16

someone could be waiting to pop in the driver’s side door. I keep an eye out for feet as I approach my vehicle, and close and lock the doors before I transfer to the driver’s seat. This kind of vigilance lies at the heart of the adaptive self-defense and functional fitness program taught by San Diego-based instructor Greg Fraser. One of his students, Therese Riedel, a C5 quad, says, “I recognize what people are doing around me. I like to be able to defend myself and be able to react under any circumstance.” Riedel, 22, has been training with Fraser for over a year to increase her function and balance. Fraser says growing up around people with disabilities and a friend with MS made him aware of the need for a new approach to self-defense. “After reading about people in chairs being pushed over or pulled out just for someone to take their bag, I knew I needed to help,” he says. “The practical applications of training and self-defense give people the strength and confidence to handle themselves in public.”

Be Prepared to Act If you end up in a situation that demands physical action, instructors say it is important to be mentally prepared and committed. “You need to be able to flip a switch and willingly cause physical harm to another person,” says Gallagher. Are you willing, for example, to stick your thumbs his eyes? “Answering

l i f e i n a c t i o n • S E P TE M B E R / OCTO B E R 2 0 1 1

Gripping her adaptive “T” key ring (detail below), Kate aims for an eye.

that question and understanding the ramifications of your actions is part of being ready,” he says. “Self-defense is not about causing pain — it’s about injury,” according to Gallagher’s school of thought. “You must want to make someone unable to use a part of their body.” Since you may not have the strength or function to sustain a prolonged assault on wheels, lessening the capabilities of your attacker as quickly and severely as possible will be crucial for your success. So where do you start? Some of the best targets are above the shoulders and below the waist, such as eyes, nose, throat, groin, shin and instep. Injuring any of these areas can incapacitate someone and give you the chance to escape the situation. And the added surprise of a blow from a wheelchair user might just give you another few seconds to get away. The trick, Gallagher says, is to bring the attacker to your chair level. If they bend down for an initial assault, look for any exposed bodily targets easily reachable, especially the eyes. However, if you have to make the first move to bring

them lower, one method is to run over their foot with your wheels or nail their shin with your footplate. Power chair users have some major leverage with this move! You can capitalize on their reaction — most likely grabbing their leg and/or bending over — as a chance to attack above the shoulders. Then the best physical weapons are your fists, fingers, forearm, palm, fingernails, teeth and voice. Using your chair, car keys, sprays or something like scissors as weapons of opportunity can help as well. The angle of your chair can also be used to your advantage. “You want your chair in a position of safety. Angle it to your stronger side to get the most out of your self-defense movements,” says Fraser. Obviously it’s best if you can stay in your chair, and there are ways to make it more difficult for someone to pull you out of it. Fraser taught Riedel to bring her elbows towards her hips to use the center of gravity to her advantage. This provides better trunk control and keeps your rear firmly planted in your chair, making it harder for the attacker to grab you. If the assailant does get you out of your chair, assume the fetal position if possible. That will make you a smaller target and can even work as a fighting stance, depending on your abilities. If you have a lot of upper body strength, for example, you could try knocking your attacker to ground and hitting the target areas as described.

Protecting Your Own Body As you defend yourself, or if you find yourself in a situation where you can’t fight back, you need to be ready to protect your body. Cuddy and Gallagher both suggest ducking your chin to protect your throat and raising your hands over the front of your face. You can expose the top part of your temple; it’s the hardest part of your skull and can sustain the most force. Don’t forget to use your chair frame as a protective barrier and your voice as leverage too. “Yelling ‘fire’ will usually make people more apt to help,” Gallagher says. “Many times people won’t respond to other cries for help, especially when there’s a physical altercation.” Just be aware that some people may be angry if tricked in this way, and you could even be sued if the responder is hurt. You should leave the scene as soon as

physically possible and keep an eye out for additional attackers or for the original assailant. Call police for help from a public place when possible — don’t fiddle around trying to find your cell phone in a vulnerable location. Clearly, avoiding dicey encounters is the best scenario, but if bad stuff does go down, the more prepared you are, the more effective you can be when defending yourself. “Since starting my martial arts training, I feel that I can handle more situations than ever before,” says Riedel. As for me, I’m more aware of my environment and I’m confident I can better anticipate situations that might threaten my safety. Knowing I can use my ripped biceps for a throat chokehold or my bony elbows for a groin jab gives me all the assurance I need. Perhaps I still don’t look menacing, but behind my sweet exterior is a person willing cause some damage to protect myself.

Moves to Consider There are many, many schools of thought on self-defense. Techniques vary widely, as do recommendations — and laws — about carrying weapons such as handguns. It is up to each individual to determine his or her abilities and comfort zones, and the legal restrictions of any particular state or local government. If you are serious about learning self-defense, find a qualified instructor who can teach you how to best work with your strength, dexterity and personal beliefs. With that in mind, here are a few moves you might want to inquire about, should you choose to pursue a self-defense program. Eyes: Generally speaking, anything in the eyes will have strong effect: dirt, pepper spray, mace. You may be able to use thumbs, hands, fingernails, keys or other weapons of opportunity to injure the eyes. Groin: Most people know this is a vulnerable area for male attackers. You may be able to use an elbow, forearm, hammer fist, palm heel or open palm to injure this area. Or you may have something on your chair at groin level. Shin: You may be able to propel part of your chair, such as a footplate, directly into the shin. Instep: You may be able to use the force and weight of your chair to run over the instep of the foot.

Kate’s instructor shows her how to use her chair to injure the shin or instep.

Busting Bad Guys and Stereotypes

y day, Jessica works in the strict confines of the legal system while Charlie manages her bakery. By night, they roll through the streets as deadly assassins. Weapons and wheelchairs at their ready, they are shattering stereotypes and proving that people in chairs can fend for themselves. Meet Tiffany Giddes and Teal Sherer, the paraplegic actresses taking on the roles of Jessica and Charlie in the indie film Collision. It’s a butt-kicking film made by, and starring, people living with disabilities. The two met at an event several years ago and eventually settled in Los Angeles to pursue their acting careers. They have remained close friends, and when the chance to work together on Collision arose, they couldn’t resist. “The idea for Collision had been brewing in the back of my head,” says Giddes, who also serves as an executive producer. “I wanted a movie to have two strong wheelchair leads and bust the stigmas of Hollywood.” In Collision, Jessica and Charlie deal with the dark life of the assassin world while confronting the personal issues of their past and present. Jessica was injured by a drunk driver, and Charlie was paralyzed on an assassin job. The two meet, and Jessica accepts Charlie’s offer to leave rehab and be part of a demanding training program. Jessica later discovers Charlie’s link to the assassin world and eventually becomes her partner. Their double lives lead to keeping secrets from family, friends and Charlie’s fiancé, but when danger confronts them head on, their biggest secrets are between each other. “There was an amazing adrenaline rush (during filming),” says Sherer. “The challenge of living a double life and being in such a physical role really allowed me to sink my teeth into this

Giddes, left, and Sherer.

project.” She worked with her personal trainer and relied on her professional dance background to master the moves caught on camera. Being fit and agile helped her to move with precision in fight scenes and other physical encounters. Giddes found the movie’s demanding training routine to be empowering. “The more I learned, the more I understood how to incorporate my chair with the moves,” she says. “Understanding your body is key. And you know what? Certain movements are even more powerful in a chair.” Using the momentum of your chair or the thrust of a spin movement can make throwing a punch have much more of an impact. With post-production wrapping up in September, the next step for the duo is getting Collision into a film festival. They want to expose people to the lives of wheelchair users with powerful careers, significant others and butt-whupping capabilities. “Being confident and having a sense of sureness about yourself makes you feel that much stronger, more ready to take on what’s next,” says Sherer. — Kate Matelan Check out the official Collision website for more details www. collisionthemovie.com.

S E P TE M B E R / OCTO B E R 2 0 1 1 • l i f e i n a c t i o n

coverstory Emergency Planning:

My First Post-SCI Disaster

Carla Steinbuchel demonstrates how she huddled in her bathroom with her dog during the tornadoes. She placed her radio, candles, water and other emergency items within reach, but when her cell service died, she realized the tornadoes had reduced her phone to “nothing more than an expensive flashlight.”

he electricity went off as my dog and I huddled in my power wheelchair in the bathroom, bracing for a direct hit from a nearby tornado. The warning sirens were loud, muffled only by the torrential rain and strong winds. I wondered — should I close the door? With the door closed, I couldn’t hear the tornado sirens but we might be more protected. What if the door stuck? Would anyone find us? As I shut the door, I wondered whether I needed a helmet to cover my head. I had finally completely moved into my newly modified home in Madison, Ala., just under four weeks earlier, after two years of planning and a sevenmonth wait for construction. Moving

boxes were still in my garage to be unpacked. My neighbors were still strangers. While this move marked a personal milestone on the nearly six-year journey of learning to live with a C5-8 spinal cord injury, the historic wave of tornadoes that destroyed much of Madison County and the Southeast on April 27 resurrected a nagging doubt: Was I crazy to think that I could live alone?

Taking Shelter Growing up in tornado alley, I knew from experience how to find a safe place. Even so, finding a small interior room that will protect me in my power

l i f e i n a c t i o n • S E P TE M B E R / OCTO B E R 2 0 1 1

wheelchair is more difficult. The widened doorway and offset hinges on my daughter’s bathroom door provided just the space needed to squeeze my wheelchair deep into the room. The flashlight and laptop I grabbed as I rolled toward the bathroom provided some light. Once situated, I tried to call my daughters in Birmingham and Huntsville to see if they were safe. A moment of fear crossed my mind when I realized I didn’t have cell phone service. My cell phone is my lifeline for emergencies. I keep it with me on my chair at all times. Now, the tornadoes had reduced it to nothing more than an expensive flashlight. What would I do if I needed help?

After nearly two hours in the dark, I opened the door slightly to hear if the tornado sirens had stopped. They were no longer audible. I emerged from my tiny shelter to find that my home was still standing. It was dark outside, windy and raining. I would have to wait until daylight to see if anything on the outside was damaged. I had never been so thankful to be able to care for my own personal needs. Throughout the night, I found myself wondering how I would have survived if I depended on attendants or caregivers. How would an assistant even get to me? Would medical supplies or other necessities be available in emergency shelters? What if I lived in a home that had been destroyed?

A Week Without Electricity Morning arrived, finally, following a long sleepless night. Neighbors were in their yards assessing the damage to their property. Uprooted trees, relocated lawn furniture and debris from the high winds littered the streets. I was fortunate. In spite of the close proximity of an F5 tornado with 200 mph winds that devastated a nearby community, our neighborhood was relatively untouched. As my new neighbors and I surveyed the condition of our homes, we exchanged

Practical Survival Strategies

By Carla Steinbuchel

“a nearby grocery superstore brought in huge generators. they allowed me to use the outlets in the coffee shop to charge my wheelchair batteries.”

contact information and many people encouraged me to knock on their door if I needed help with anything. It was not long before I acted on those offers. The first day was somewhat uneventful. I had plenty of food and water, but I immediately felt the isolation that follows interruption of power and telephone service. I had no means of communication or obtaining information other than face to face. This was a wake-up call for changes that I would need to make for emergency preparedness in the context of living alone. My most immediate concern, besides being unable to contact my family and friends to let them know I was OK, was to figure out how to charge my wheelchair batteries. I usually plugged my wheelchair into a charger while I slept. I had already missed one night and noticed that my battery indicator had dropped a couple of bars. How long would it be before I ran out of power? I mentioned my concern to a couple of my neighbors and asked them to let me know if they had any ideas. The next problem to be solved was how to open the electric garage door to get my car out. I located the manual override with the help of a woman who was walking by with her dog. I had a full tank of gas, so just had to find somewhere to go once the roads were cleared and passable. Power conservation and backup options were the next order of business. I have a manual wheelchair, but also have a brachial plexus injury from my accident. Because of minimal function in my left hand, I tend to wheel in circles.

t’s true what they say: The key to surviving a disaster such as a hurricane is to be prepared. Once the disaster strikes, events move quickly, so it’s necessary to think through what you might need well ahead of time. Following are some steps to help you devise a personal emergency plan. • Make a getaway kit. If you have your own vehicle, write out a list of family and friends that you might be able to stay with in another city or a safer part of your region, and map out a variety of routes you’d be able to take, since some roads may be closed. Print out directions and maps, as you may not have time or Internet access when disaster strikes, and put together a kit that you can grab at a moment’s notice. Another item for the kit is a list of hotels outside the danger zone that you know meet your access needs (include phone numbers and directions). Even after 9/11 and Hurricane Katrina, many emergency planners still do not take accessibility

concerns into account when they are drawing up their plans, so it’s best not to depend on them. • On a clear day, find out where the closest emergency shelters are and visit them. Do this even if you plan to leave the area during an emergency, since some situations unfold too quickly to follow Plan A. Find the shelters by contacting your local Red Cross chapter (www.redcross. org) or your local government. If the shelter location does not provide basic access, find out who to talk to about getting the shelter moved. • Find out what types of transportation are available in your county. If you have trouble finding out who provides local transportation, try calling 211 or 311, contacting your local center for independent living (www.ilru.org), or any organization you receive services from. If there is a local registry, sign up for it so that you’re on the list to be picked up and evacuated. But if at all possible, have

a back-up transportation plan that does not depend on local government or service agencies. • Personal assistance may be a challenge, since your attendants may need to go home to their own families. Know which of your assistants may be able to stay with you through an emergency situation, and which friends or family members you can count on in their stead. If you usually rely on your mobile phone contact list, make sure you write these numbers down, in case your phone dies and you don’t have electricity to charge it. And remember, even land lines may go out in an emergency. • Most important of all, get to know your neighbors. Remember, phone lines and cell towers may go out, as well as your electricity. But your neighbor may have a generator you can use, a phone that works when yours doesn’t, or other resources that can be shared. They may need your help, too.

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coverstory If I had no other option, however, I could manage. By day two, a nearby grocery superstore brought in huge generators and opened for business. They allowed me to use outlets in the coffee shop to charge my batteries.

Communication Restored As I sat in the grocery store for four hours every other day to charge my wheelchair, I heard stories and talked with some of the people whose homes had been damaged or destroyed. News of the extent of the damage from the massive supercell storms was finally becoming available. According to the National Oceanic and Atmospheric Association, there were an estimated 305 tornadoes across the Southeast, with a death toll of 327 people — 240 of whom were in my home state of Alabama. Mayors of cities throughout Alabama implemented martial law to protect homes and businesses from looting. Citizens were ordered to be in their homes from 7 p.m. until dawn. We were told the power outage would last at least a week, along with inter-

mittent outages as power lines were erected and repaired. I timed my four-hour “sit-ins” for battery recharges at the grocery store so I could arrive home before the evening curfew. On the third day, to my relief, I found a spot on a hill on the way to the grocery store where I could pick up cell phone reception. I was finally able to contact family members to let them know that I was alright and to check on my daughter and her family in Huntsville. I learned that my youngest daughter in Birmingham had been able to fly to Texas the day after the storms in spite of the massive damage from a touchdown in the community surrounding her college campus. My days shifted to a dawn-to duskroutine, waking with the sun and going to bed when it became dark. I took special care with transfers to avoid falling. Lack of refrigeration was a concern for storing my bladder irrigation solution. I changed my scheduled daily irrigation to every third day and discarded the unused portion when I no longer had a way to keep it cool. I also lost all of my refrigerated food, so I had to restock after the power resumed. My overhead power lift, used for baths, had to be

replaced, along with batteries in fire alarms and other central alarm devices. Thankfully, I had enough medication and medical supplies for several weeks. Phone service was restored on day five and power resumed one week to the day after the tornadoes. The curfews were lifted. In my small world, life began to return to normal. However, workers were still trying to remove fallen trees and install power, telephone, and cable lines in the county hardest hit by the storms.

Rebuilding, Rethinking Signs on several local businesses were damaged or missing and huge dump trucks removing debris were everywhere. My bank was still closed, but merchants were finally able to process debit card purchases. Cash-only purchases had been in effect for several days, including purchases of gasoline. FEMA and insurance companies set up claims locations in the most damaged areas and in each city in the county. People arrived from neighboring states to help with the debris removal process in preparation for rebuilding. I learned that during the crisis, home

health agencies sent employees to check on their clients. Some of the health care facilities held discharged patients until power was restored in the patients’ home community. Oxygen refills for portable tanks and medical supplies were difficult to obtain. FEMA set up reimbursement centers to replace food losses, primarily for people with fixed incomes or those needing assistance. Complete recovery from a disaster such as this will take years. One couple I know is still living in an RV after losing their home for the second time to tornadoes. Another couple, whose home was destroyed by a massive tree crashing through the roof — as they barely made it into a closet — lived for several months in an apartment. They decided to relocate and buy rather than rebuild. Surviving this violent tornado outbreak taught me that I was not nearly prepared enough for a disaster of this magnitude. I can only imagine what it would have been like to be in the midst of an area of massive destruction in a wheelchair. It was obvious that I needed to put together a better personal safety plan, especially because I am living independently and rely on a wheelchair for mobility.

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How Prepared Are You? As a T7 paraplegic living near Los Angeles and in one of the world’s most notorious zones for earthquakes, Andrew Angulo was no stranger to thinking about how he’d survive “the big one” in his chair. Then the big one did hit Japan Mar. 11. “I thought how scary a situation like that would be,” he says. “It got me thinking, if something were to happen right now how prepared are we?” Instead of just wondering, he decided to find out the answer. He grabbed his video camera, wrote down a list of preparedness-related questions and took them to his SCI support group at Northridge Hospital. There, Angulo, a freelance videographer, started filming his fellow group members and asking them about how prepared they were if a disaster struck right then. The resulting seven-minute video — “Disasters & Wheelchair Disabilities — Are you ready?” — is relevant for any emergency, including hurricanes, fires, floods and tornadoes, all of which have devastated parts of the U.S. this year. “Many times we’re out and about — we’re at the mall, we’re at the store. It was really important to see if people had enough supplies — catheters, pills, medication, anything — that they would be able to survive for a couple of days if an earthquake or some sort of disaster were to happen at that time,” he says. “The result was really interesting. Some people were really ready and a lot of people weren’t.” Multiple people said they had no supplies with them at all. One woman who relied on heart medication had left all her pills at home. Others had minimal supplies and admitted they would have struggled with any event that confined them for more than a day. “I think it really opened everyone’s eyes,” says Angulo. The exercise led many members of the support group, including Angulo, to change the way they prepared for the unexpected and what supplies they kept with them at all times. Angulo concludes the video with a summary of suggestions from the group. You can see their recommendations at http://bit.ly/nQql57. Or check out his YouTube channel at http://www. youtube.com/user/angl747.

[Member Tips]

‘Stay Kits’ and ‘Go Kits’ Go Kits Craig Fabian, 57, C5, Midlothian, Va. Just like the American Red Cross suggests, the two biggies in emergency preparedness are making a plan and making a kit. Personally, I think it should be several kits. Besides a “shelter in place” kit like everyone has, how about a “ SCI Go Kit” that contains all the items an SCI might use in their daily life, like urological supplies, catheters, medications or suppositories. Also, include a piece of paper stating that you are an SCI just in case something happens and you become unable to communicate. One kit that I especially like is a “bedside kit.” It is nothing more than a small pouch placed within reach when you are in bed that contains your cell phone, a flashlight, medication and a snack. If the power goes out in the middle of the night, you’re ready! It wouldn’t be a bad idea to have another SCI Go Kit in your car, or maybe a desk drawer at work. Making a plan is especially important for SCI. Lots of buildings only have one or perhaps two accessible entrances. What will you do if they get blocked? Having support teams is another good idea. Notice I said teams — plural! A support team is a trained individual or group of individuals that have agreed to assist you if an emergency happens. Mentally, go through your regular day and take note of the places you normally are. Home in the morning? Good idea to have a team you can rely on if something happens when you are there. How about developing other teams for when you are away from your home, such as work, school, church and other places you attend regularly. Stay Kits Judy Talnadge, 40, Muscular Dystrophy/Spina Bifida, Oceanside, Calif. Because officials warn it may take 72 hours for responders to get to you, it is important to have a minimum of 72 hours-worth of bottled water and non-perishable food that does not have to be cooked available for every person in the household, along with the same thing for any animals that you have. You should also have a minimum of a 72-hour supply of all necessary medications available for all family members. If you use a power wheelchair make sure that you also have a working manual wheelchair available in case you have to evacuate, because you may not be able to take your power chair with you. Have a flashlight and a battery-powered radio with extra batteries available for both at all times. Place extra batteries in a drawer in the refrigerator to extend their shelf life. It is extremely important is to listen to the radio so that you know what is happening and to follow the advice of any officials as to what else you need to do.

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[solutions]

Ask Anything The company that has serviced my wheelchair and taken care of all my seating issues for the last 10 years stopped serving my area last year, forcing me to switch to a new supplier. I chose the only company covered by my insurance and so far the results have been horrible. I’ve been waiting three weeks to get a tech to come to my house to fix my wheelchair, and whenever I call to see what’s going on, I am told “my” customer service representative is busy. What can I do to get the service I need? — Puzzled in Pittsburgh Ann Eubank explains the UsersFirst mission to an Independence Expo attendee.

We spoke to two experts about your situation. First, Spinal Cord Central manager Bill Fertig suggests seeing if you can get past the service rep by demanding to speak with the wheelchair service department manager. If that doesn’t work, call corporate. “Don’t just sit by and wait for service representatives to get back to you in their own time,” says Fertig. “If your durable medical equipment provider is a franchisee of a larger corporation, you may need to reach out to corporate supervision to get a more appropriate and timely reply to your needs.” Or you can bypass your provider altogether and take your complaint straight to the insurance company. “Contact your insurance provider and let them know the provider is not meeting your medical needs. If you have Medicare, call 800-Medi-

Ask Us Anything! Life in Action draws on the expertise of United Spinal programs to answer your questions and provide resources for further information. Send questions to lifeinaction@unitedspinal.org.

Spinal Cord Central care,” says Ann Eubank, of UsersFirst, a United Spinal program that advocates for greater access to wheelchairs and other needed mobility equipment. “Also, contact your former supplier and ask them why they are no longer able to provide services to you. They may have helpful information.” It’s not just happening to you — we’re hearing stories like yours from wheelchair users across the country. Increasingly, insurance companies are choosing the lowest bidders for medical equipment, which is pressuring suppliers to offer cheaper, inferior products and services. “Insurance companies make more money if they provide less. It makes sense they would try to get the most for the least amount of money,” says Eubank. “But the result has been that people with disabilities are left with fewer reliable and adjustable wheelchairs to choose from, and less service — whether it be repairs, adjustments, qualified personnel or even a local physical location.” If you keep hitting roadblocks, Eubank encourages you to contact her at usersfirst@unitedspinal.org, and she’ll help you navigate the process. Also, you are invited to tell your story at www.userfirst.org/submityour-story. “We can change discriminatory policies like this if we stay connected as a community to fight for our right to freedom of movement,” she says. However, if you’re on Medicare, you may face an extra challenge obtaining appropriate service. “Since you live in one of the nine areas where Medicare is testing competitive bidding for durable medical equipment, that could be the reason you were forced to change from your long-term, reliable DME provider/servicer to another that is now approved by the Centers for Medicare & Medicaid Services,” says Fertig. Competitive bidding is a program set up by Medicare where medical equipment companies are forced to bid on the ability to continue billing Medicare for home medical equipment like power wheelchairs, oxygen, mailorder diabetic supplies, and hospital beds. The goal of the program was to reduce Medicare costs and ensure supplier reliability but many groups, including UsersFirst, are concerned that rate cuts will prevent quality suppliers from providing the necessary service and products. “If you don’t have the money or coverage to get what you need, you should look into grant opportunities or other possible funding options,” says Fertig. “Get in touch with us at www.spinalcord central.org for more information and help.”

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

Editor: The team at Spinal Cord Central has amassed an impressive collection of resources to help answer your SCI/D-related questions. Here’s a look at one of the newer additions. COMPLEX, a 64-page booklet available as a PDF, gives an insider perspective on the daunting task of obtaining complex rehabilitation equipment, a term used by the industry to differentiate the highly specialized and customized durable medical equipEmily ment used by many people with SCI/D from the more generic equipment often provided by Medicare. Author Mark Sullivan, global vice president for the power wheelchair and seating categories at Invacare, relies on clear prose and vivid, sometimes graphic, imagery to tell the stories of six individuals and how their lives have been dramatically improved by their sophisticated technology. After providing a basic overview of the complex rehab industry in his first book, DENIED, Sullivan said his goal this time was to “dive deeper” into the nittygritty details and better educate the public about how people with SCI/D must navigate an intricate series of interactions with therapists, caregivers, rehab tech suppliers and insurance providers to ensure they have the proper equipment. “A friend recently shared with me that we often do a disservice to our industry by always showing healthy, bubbly consumers in our literature,” he wrote in his preface. “I wanted to focus on the highly disabled and to give a voice to those not often heard,” he elaborated in an interview. “I would hope that if the book makes its way into the hands of the payers they could begin to understand just how complicated this process is and that a wheelchair is just not a wheelchair.” The photo above shows Emily, whose family was able to procure portable oxygen, a 360-degree headrest, a tilt-and-recline chair and other equipment that allowed her to go to school. Now 28, Emily sums up the tremendous value of appropriate seating, positioning and mobility technology: “One of my life’s goals has been to be seen as an active and independent individual in today’s society by having a job. I sought to reach this goal by joining my peers in going away to college and earning a BA in communication studies. I now have a job in marketing and believe that my success in achieving this goal has much to do with the outstanding technological resources available to me.” Visit www.spinalcordcentral.org to link to this resource.

Threads: Winter Coats

ith fall fading fast, it’s time to face the gray and get ready for the long winter haul. You know what that means: breaking out the winter coat and scarves for the frigid, blustery season. But let me guess — you haven’t been able to find a coat that’s the right length or has the most accessible closures, right? I know the drill. But thanks to my manual chair thrashing many a coat, I’ve racked up some good shopping practice over the years. Through trial — and a whole lot of error — I’ve found the “hits” and “misses” when giving a new jacket a winter test run.

Style You want to look stellar while still wearing a style of coat that’s functional. If the coat is supposed to go past your waist, then don’t even consider it! The excess fabric from these styles has nowhere to go while you’re sitting and gets in the way of moving comfortably. The solution? Opt for styles that are cut shorter or easily fan out at the hips without too much fabric. I know both of these styles will be much easier for the ladies to find, but guys, start hunting for the latter of my recommendations. Bomber and motorcycle jackets for men and women are usually shorter styles. Look at pea coats as well, although you’ll find that some manufacturers make them too long. Ski jackets are a long shot, but can work. I find puffer jackets (the down feather puffy ones) an excellent style, but they don’t always dress up a nice outfit. Take a look at J.Crew puffer jackets — they rank high in my jacket choice for style and for all the reasons below.

Fabric Mix delicate fabrics with snow, sleet and ice melt, and you’ve got a big problem. Throw in a chair or other mobile equipment, and you’re lugging around a lot of that winter mess. When you’re hunting for that new coat, think about the effects of the elements (most likely the cuffs and bottom of the jacket will be seeing the worst of it). You want a fabric that will wick away the water and/or dry quickly. Another reason I love the quilted puffer jacket — it does just this! Wool coats are great for warmth and provide a decent coat life, but they can absorb a bit of slush on the end of the sleeves. If leather’s your choice, always make sure it’s treated and beware of it getting eaten up when moving at high speed.

By Kate Matelan

Closures

Kate’s Top 5 Tips:

Depending on your hand function, closures can be a deal breaker. As a low-level quad, buttons and zippers can be difficult, but give me snaps or a belt that ties and I’m golden. Some coat styles have several types of closures in one — maybe toggle loops and snaps — so always investigate before you put the jacket in the “no” pile. If all else fails, I have three go-to sources for making the coat work. If you can’t find a closure that fits your function, make sure you invest in a very warm coat and a thick, cozy scarf to fill in the unclosed jacket. Another option is a pullover jacket that eliminates the closure problem altogether. Or if you’re the creative type and your jacket style permits, take it to a trusted seamstress and have the skilled hands of a professional sew in some Velcro closures.

• Try on the coat with your heaviest winter sweater since the jacket needs to fit comfortably with the max amount of clothing. Move around and you’ll know right away if it’s the one. • You get what you pay for. Choosing a coat that’s well-made and from a trusted brand is worth the investment when it comes to style and durability. • If the outside of a well-loved coat is still in decent shape but the inside isn’t, simply replace the lining. • Keep any slush your jacket doesn’t slick away off your clothes by pushing up your sleeves underneath the jacket. • Add a bold pop of color with a scarf or gloves, and you’ve upgraded your solid jacket in an instant!

Color Bright colors rock, but they often show all of the dirt and wear on a coat. Although you may find it blah, a black, brown or gray jacket is probably your best bet for giving the appearance of being clean and wellmaintained. Plus, dark winter coats are much more versatile with your outfits.

Cleaning

Try pushing up your sleeves under your coat to keep them slushfree.

The cleaning tag kills me — it’s that moment of panic when I decide if I can swallow another “dry clean only” item. Sometimes you can get away with dry cleaning a jacket twice in winter, but it depends on how hard you wear your clothing and how brutal the elements are that season. Just remember: when your coat is at the cleaners, you need to have a backup. If you get that pesky pilling on your jacket from it rubbing on your chair, buy a garment groomer at the local drugstore. Some of these tools look like plastic combs while others resemble a scratchy Styrofoam square. SEPTEMBER/OCTOBER • LIFE IN ACTION

solutions

Access: A Rolling Home

A custom chair lift can make all the difference in accessing a motor home.

With a little “imagineering,” Bob Helvie and his crew at Startracks can devise solutions for many obstacles. Here, an in-coach platform lift handles a jump in floor height. 24

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

By Ian Ruder

veryone who uses a wheelchair or has limited mobility has a travel horror story they can recall all too vividly. Whether it’s the airline breaking a chair, the hotel not being accessible or simply forgetting a needed piece of equipment, even the best planned of trips can be complicated by an unexpected disability-related occurrence. But what if you could travel everywhere you wanted to and take all the accoutrements of home with you? Recreational vehicles have always promised exactly that, but for many people with spinal cord injuries and disorders that promise has long seemed out of reach. Bob Helvie says that doesn’t have to be the case anymore. Helvie is the founder of Startracks Custom Lifts in Elkhart, Ind. Since 1988 he has been “imagineering” lifts, modifications and anything else he, or his customers, can think of to make the world of recreational vehicles more accessible for people with disabilities. “Everybody has a different story and needs, but I haven’t run into anyone I couldn’t accommodate yet,” he says. Helvie’s latest project is modifying a 10-year-old Holiday Rambler Imperial RV for a college student who was paralyzed in a diving accident. Helvie is installing an under vehicle lift, a special door he custom makes, a track system throughout the interior and a gutted and refurbished bathroom that will be fully accessible. To top it off, all the electronics and devices will be controllable by a smartphone. “It’s going to pretty slick,” he says. Helvie saw the need for accessible innovations while working with the RV industry over 30 years ago and began devising solutions. What began with a simple lift for a travel trailer has developed into a fullfledged business with multiple divisions, including medical and sports modifications. Helvie’s website has hundreds of photos of the trailers and motor homes he has built and modified, and the blueprints he used. Folding walls, power running boards, suitcase lifts — you name it, Helvie and crew have likely done it. Through their creativity they have likely saved their customers hundreds of thousands of dollars as well, but the high cost of modifying or purchasing an RV can still be prohibitive. “A lot of people will come to me and say we want a trailer and then when they find

What if you could take all the accoutrements of home with you? out what it costs to do it, they’re just not going to have the funds to do it,” he says. Helvie said he tries to redirect people who call looking for a new, custom motorhome. “It’s a lot less expensive to find a good, used, low-mileage one and then do the conversion,” he says. Even starting with a used motor home, the conversion can be expensive, but the cost won’t come close to what it would take to purchase a new, custom-modified motor home. Bill Gratzke, president of the Handicapped Travel Club, says there are only three manufacturers who build new, accessible motorhomes: Thor Motor Coach, Rexhall and Winnebago. Unless you have upwards of $750,000 lying around, expect to be disappointed. Sadly, Gratzke said he only knows of one place in the US where someone could rent an accessible custom coach, and there is only one to rent at that location. Bill and his wife, Barbara, are one of the Handicapped Travel Club’s five founding couples. What started in 1972 as 10 people who shared an affinity for travel has grown into a group of over 280 enthusiasts who plan regional meet-ups and events. You don’t have to have a disability to join, and Gratzke says the members’ ages span six decades, all types of disabilities and every type of RV you can imagine. A number of the club’s members took Helvie’s advice and use modified trailers. Gratzke has heard nothing but praise for Startracks. “They make a very, very good trailer,” he says. Gratzke encourages anyone with a disability who is interested in living life on the open road, but hasn’t been able to figure out how to get started, to get in touch with the club. Its website, www.handicappedtravel club.com, lists upcoming events, hosts ads for used RVs and explains all the details of membership. For more information on Startracks and accessible RVs, visit www.startracks.org.

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AFTER: … an accessible bathroom that could accommodate a shower chair or a bench seat. Helvie later closed the room with a custom folding wall. SEPTEMBER/OCTOBER 2011 • LIFE IN ACTION

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Dating/Relating: Telling Your Chair Story

icture yourself meeting a sizzling new stud or siren while grabbing drinks with friends at the bar. You two start chatting it up and exchange numbers. Perhaps this person actually calls you up in a respectable amount of time, and afterwards you meet over dinner some place where the DJ isn’t dropping crazy beats and the drink of choice doesn’t contain Red Bull. You can actually talk at a normal tone of voice and get to know each other beyond cocktails and peanuts.

Axel Grande

Zoë Amour

Round 1 - Small talk: How have you been? Round 2 - Appetizer talk: Wait, you dig The Black Keys too? Round 3 - Dinner talk: So, why are you in a chair? Ding ding! Round 3 is the part where you either answer “the question” or, most likely, you preempt it by bringing up the story of how you got in a chair first. I’m a huge fan of breaking the ice with my bio since people aren’t sure if they should ask about my disability — especially when already dealing with first date jitters. When you jump in first, it shows confidence and lets your date know that you’re comfortable talking about your disability and comfortable with yourself. Try to not make your chair story an awkward conversation starter, and be ready to lighten the mood if the other person starts playing with their food. There’s a chance your new squeeze may never have dated someone living with a disability, so be ready to spell out the medical lingo you’re throwing around. I once told a date I needed to cath, and the baffled look on his face clued me in that my normal descriptors might need some tweaking. This is the point where you laugh off the fact that maybe you should have gone for “ladies room” instead. Also, casually clue the other person in on your limitations, if that’s something you want to share. I go for the humor here, something along 26

the lines of “I can do just about anye’ve all been there. We’ve all told our story. We’ve thing, but you might want to avoid all gotten the look. And tap dancing and figure skating dates we’ve all dealt with the in the future.” If the other person silence afterwards, wondering how to laughs, I’m already giving them high keep things moving and let the other marks for digging my joke. After my person know it’s OK. light lead-in, I ease into something a Yes, that’s right. I’m talking about little more serious about my injury. the first time we tell someone the Just steer clear of handing over your story of how we came to use a wheelmedical records — you don’t have to chair. The story of paralysis, rehab, spill it all on a first date. illness, pressure sores — The date isn’t all about and everything else that you, right? comes along with SCI. Now if the person Add on what life is disability is sitting across from like now — dealing with a pretty big you can’t handle a lot discrimination, accesof what you told them sibility (or lack thereof), elephant in about your disability attendants and three-hour the room so morning routines — and (yeah, it happens), then it s important that first explanation can maybe consider declinturn into one hell of a deep ing that second date and to be com talk. For someone who’s looking elsewhere. Be fortable on a date and not used to sure to kick any pity digesting so much info, it parties to the curb. And can be a bit overwhelmif they feel rejected? I ing. At the same time, say if you can’t take the there’s no sense getting to the fifth date chair, don’t complain when your butt with the other person still wondering hits the ground! why you’re disabled. But in all seriousness, telling So, what’s a dating crip to do? Time your date your story and mixing in has taught me the value of the “Three some of the what-happened-next bits C’s”: Care, Comfort and Confidence. communicates that your disability is By being careful how and when you tell a topic you two can discuss freely. your date your story, comfortable with Believe me, more questions will your delivery and confident with both, pop up as you forge ahead and share it’s possible to explain your disability in a way that doesn’t kill the mood. Inmore of those intimate details — stead of alienating your date with your this is only the beginning!

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

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story, you can do it in a way that makes her relaxed and interested, and you can set things up to move forward. Timing, lead-in, and content are key for careful delivery. Personally, I like to tell my story when I know my date is getting comfortable with me. It’s a judgment call, but body language and eye contact are pretty safe tells. Once things are comfortable, it’s time to give an intro. Sometimes, I’ll show a cool disability trick, like explaining tenodesis (the way that C5-6 quads can tighten our fingers by moving our wrists), with a reference to my injury. Other times, I’ll be more forward: “So, have I told you why I’m in a chair?” By setting things up, you can help make the other person more comfortable, and by leading the way, you show that it’s OK to talk about SCI. Now, a disability is a pretty big elephant in the room, so it’s important to be comfortable explaining how it came about. Being chill (as we say in California) with what’s happened is healthy, calms your date and is attractive as hell. While accepting everything that’s happened might be a little deeper than a dating column can cover, consider talking to someone who can help you get there if you haven’t already arrived. Lastly, breadth is key. It’s equally important to be comfortable with post-story conversation, so do what you can to be OK with wherever things might go. Finally, confidence says that SCI is more than just “OK.” Comfort might show you’ve accepted your disability, but really tackling the story shows you’ve taken life by the horns. Going a bit over-the-top with a tale from rehab (using your one day outside to get sloppy at the bars) or the first year out (taking a turn too fast and tipping over your chair) can really lighten up a potential downer, too. If confident storytelling means practicing in front of a mirror or with a friend, then practice! In the end, it’s easy to perfect how and when to “come out as disabled” in the dating scene. By doing so in a way that makes your date comfortable, you can set yourself up for a rewarding relationship down the road — and, of course, all the great places that’ll go.

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TechGuide: Standing Wheelchairs

any clinical experts agree about the benefits of standing, especially for those of us who can’t do so naturally. No matter what standing device you use, as long as it’s safe, getting vertical can help with circulation, bone density, breathing, cardiac function and, of course preventing pressure sores. Some say it’s even good for your attitude. Once upon a time, our only choices were chairs that locked us into one position, statue-like. Nowadays, manufacturers like Comfort Orthopedic, Redman, Permobil and Levo give us options, and increased mobility. According to standing chair users who’ve written reviews on USA TechGuide, here’s how some of the more popular models stack up on key issues like bulkiness, ruggedness and portability — and the all-important one: cost.

Lean and Mean Comfort Orthopedic Co., of Taiwan, makes a variety of standing wheelchairs, from manual to power to part power/part manual. Its top-of-the-line fully powered standing wheelchair is called the Hero 1. “It’s very steady, easy to move up and down, and operates smoothly outdoors as well as maneuvering well in tight spaces,” says a satisfied user in Topeka, Kan. Eric Lee, Comfort’s marketing manager, says the company endeavors to build its chairs to be as compact as possible without jeopardizing stability. All Comfort standing chairs — except for the extra-large size — are no more than 26 inches wide and 43 inches long. At around $5,000, the Hero 1 is a bargain

LIFE IN ACTION

would make the chair monstrously large. In fact, Sam Redman, the manufacturer’s national sales manager, says it has “the smallest footprint in the industry.” It’s just 23 inches by 39 inches. Redman also seems to have solved another problem with standing chairs: Tall folks often run the risk of bumping their heads on ceilings. But the Redman Chief has Comfort Hero the lowest seat-pan compared to other power standing available: It starts at an optional height wheelchairs, but the savings come at a of just 16 inches from the floor, which cost. The chair tops out at 5 mph, can is two to three inches lower than most climb only a 10-degree slope, and does competitors. not tilt or recline. Like Redman, Permobil chairs offer a variety of tilt and recline positions in addition to being tough enough for the outdoors. With U.S. operations based in Lebanon, Tenn., Swedish manufacturer If you want more speed and tilt-andPermobil offers power chairs with a recline — and you have $20,000 to power stander and manual chairs with $30,000 — the Redman Chief might be either a manual or power stander. your standing ride of choice. Based in Comparably priced, Permobil’s newTucson, Ariz., Redman makes chairs est power standing chair, the C500 VS, with a top speed of 8.7 mph, the fastcosts $20,000 to $30,000, depending on est of all standing wheelchairs. options. A Permobil user in Pittsburgh, “I lead a very active lifestyle, Pa., says the health benefits are worth and Redman’s small footprint, the added cost. “My bones are stronger quick response and and muscles not nearly as tight [since excellent I’ve been using my Permobil standing maneuverchair],” she says. ability are miles ahead of any other chair,” says one For flexible design, though, perhaps nothing beats a Levo. A subsidiary of user in Sedona, Ariz. “This chair the Brooklyn Park, Minn.-based Dane really lets my friends see me, Technologies, Levo offers a power standing chair with a mid-wheel-drive not just a chair.” base for easy maneuverability indoors Indeed, the Redman that automatically transforms to a fourChief 107-ZRx has a lot wheel-drive base for rugged outdoor to offer with its indecruising. According to the manufacpendent four-wheel suspension for handling turer, it can climb a four-inch curb. “The four-wheel-drive, the swinguneven terrain and away controls, the flip-up four inches of ground armrests!” raves one clearance so you Levo user in Miscan speed over rocks soula, Mont. “It without being jostled. gets around You might think very well all that ruggedness on gravel

More Money, More Options

By Ben Mattlin and dirt. I also had it on some ice and it went very smoothly … It’s even stable standing and moving at the same time.” Yet once again, the trade-off for all that power is speed. Levo’s powered standing chair has a top speed of 6.2 mph. Sold through authorized dealers, Levo makes pediatric and adult standing chairs in power and manual configurations. Their prices run from $10,000 to $40,000, according to Tom Getz, director of sales for LevoUSA, in Minneapolis, Minn. The Levo base works with EZ Lock systems or you can order a preinstalled tie-down. Permobil makes its own tiedowns, but also ensures that its chairs can be used with other standard types of tie-down systems. Redman offers several tie-down options for van security, while currently the Comfort Hero 1 does not. However, Lee, at Comfort, promises tie-downs are in the works. Check out United Spinal Association’s TechGuide at www.usatechguide.org for more user-generated reviews of wheelchairs and assistive technology.

Slower, More Flexible

Permobil C500 VS

Levo

SPINAL CORD SPINAL CORD SPINAL CORD INJURY LAW INJURY LAW INJURY LAW AND YOU ANDAND YOUYOU What Need to Know WhatYou You Need totoKnow What You Need Know

Who You Need to Know Need to Know WhoWho YouYou Need to Know

Ronald R. Gilbert began

Ronald R. Gilbert began Ronald R. Gilbert began representing victims of spinal cord representing victims of spinal cord representing victims of spinal cord injuries and their in 1981 injuries and and theirtheir families in families 1981 injuries families in 1981 and is one of the country’s most and is one of the country’s most and is one of the country’s most experienced legal experts in spinal experienced legal experts spinal in spinal experienced legalinexperts cord cord injury law.law. injury

Each year more than 10,000 people cord injury law. Each year moretothan 10,000 people inEach the U.S. fallmore victim a 10,000 spinal people year than • He has worked on behalf of more in the U.S.injuries fall victim to a spinal cord injury. Such usually • Hepeople has worked behalfcord of more than 300 withon spinal injuries in 35 states. in the U.S. fall victim to a spinal cord injury. Such injuries usually result in long-term or permanent than• 300 people with spinal cord injuries 35 states. He has worked on behalf of inmore result in long-term or permanent cordand injury. Suchchanges injuries usually• The spinal health life-style cord community knows Ron cord Gilbert as a lawyer who than 300 people with spinal injuries in 35 states. health and life-style changes Thehas spinal cord community Ronfor Gilbert as a lawyer who cares.• He worked hard as anknows advocate the handicapped, havresult in long-term or permanent In addition to the loss of physical mobility and other serious cares. Heand hasdirected worked hard as an advocate for the handicapped, having founded the non-profit Foundation for Spinal Cord health and changes In addition to the of physical mobility and other long term health issues, SCIloss victims and life-style their families haveserious to Injurying Preventation, Care & the Cure. •founded The spinal cord community knows Ron Gilbert and directed non-profit Foundation for Spinal Cordas a lawyer who contend with theterm added cost of specialized and have to long health issues, SCI victimsmedical and theircare families Injury Preventation, & Cure. cares. He hasCare worked hard as an advocate for the handicapped, havloss of future earnings. contend with the added cost of specialized medical and • Ron Gilbert handles each case personally, providing support In addition to the loss of physical mobility and othercare serious ing founded and directed the non-profit Foundation through an extremely difficult of life. Heproviding balancessupport the delicate for Spinal Cord loss of future earnings. Ron Gilbert handles each time case personally, long term ahealth SCIclaim victims and their families have handling to •through of such a traumatic event with a proactive approach to the Making spinal issues, cord injury can be a complex and anxiInjury Preventation, Cure. an extremely difficult Care time of& life. He balances the delicate many practicalities people face after a spinal cord injury. Throughety producing proces. Spinal cord injury claims are involved contend withMaking the added specialized medical care handling of such a traumatic event with a proactive approach to the a spinalcost cordof injury claim can be a complex and and anxiout your case, he will support and help you as you adjust. and can take a producing long timeproces. to resolve. many people face after a spinal injury. ThroughSpinal cord injury claims are involved loss of futureetyearnings. • practicalities Ron Gilbert handles each casecord personally, providing support out your case, he will support and help you as you adjust. and can take a long time to resolve. Your initial consultation with Rondifficult Gilbert is free,of and he will tell It is important to speak to an experienced spinal cord injury through an extremely time life. He balances the delicate you then whether or not your case is worth pursuing. If it is, he attorney as soon as possible - time limitation periods apply and handling of such a traumatic event with a proactive approach to the Making a spinal cord injury claim can be a complex and anxiYour initial consultation withofRon Gilbert is free, and he will tell It isyour important an experienced spinal cord injury will investigate your case free charge. investigating claim to is speak often to easier then whether or not yourpeople case is worth pursuing. If it is, cord he injury. Throughas soon as possible - time limitation apply and youmany practicalities face after a spinal etyifproducing proces. Spinal cord injury claimsperiods are involved you beginattorney proceedings quickly. will investigate your case free of charge. investigating your claim is often easier If you or a member of your family has suffered a spinal cord out your case, he will support and help you as you adjust. and can take a long time to resolve. injury, call today to receive a free legal consultation and a compliyou begin proceedings Additional if information is availablequickly. at www.fscip.org regardmentary copy SpinalofNetwork. If you or aof member your family has suffered a spinal cord ing topics such as: Disability-Related Expenses Your with Ron Gilbert free, and he will tell injury, callinitial today toconsultation receive a free legal consultation and a is compliIt is- Managing important to speak to an experienced spinal cord injury Additional information is available at www.fscip.org regardTo reach Ron Gilbert, can phone toll free at 1-800- Liability, ing Compensation and Your Rights mentary copy ofwhether Spinalyou Network. topics such as: you then or not your case is worth pursuing. If it is, he attorney as soon as possible time limitation periods apply and - Getting Help: A Guide to Organizations 342-0330 or send an email message to ron@fscip.org. - Managing Disability-Related Expenses will investigate your case free of charge. investigating your claim often and easier - Finding and Choosing anisAttorney www.fscip.org To reach Ron Gilbert, you can phone toll free at 1-800- Liability, Compensation Your Rights

if you begin -proceedings Getting Help: Aquickly. Guide to Organizations - Finding and Choosing an Attorney

342-0330 or send an email message to ron@fscip.org. If you or a member of your family has suffered a spinal cord www.fscip.org

injury, call today to receive a free legal consultation and a compliAdditional information is available at www.fscip.org regardmentary copy of Spinal Network. ing topics such as: 20 Years - ManagingOver Disability-Related Expenses of Experience. ew obility To reach Ron Gilbert, you can phone toll free at 1-800- Liability, Compensation and Your Rights Over Years of Living Beyond Wheels. - Getting Help: 20 A Guide to Organizations 342-0330 or send an email message to ron@fscip.org. agaziNe - Finding and Choosing an Attorney www.fscip.org

N M M

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MS Life

By Josie Byzek

best strategies

Time for the Baclofen Pump? Baclofen is the drug of choice for MS-related spasticity and most people take the med in its oral form. MS spasticity is caused when electrical signals coming through the spinal cord to muscles become imbalanced, which causes the muscles to become hyperactive. Baclofen works by correcting that imbalance. But when spasticity is overwhelming and the pills aren’t cutting it anymore, it’s time to consider a pump. The pump is more effective. Not all of the oral Baclofen ingested makes it to the spinal cord, which is where it’s needed. Since the pump delivers the med directly into spinal fluid, less of the drug is needed,

and typically this also means fewer side effects. Baclofen’s potential side effects include dizziness, drowsiness, headaches, nausea and weakness. The main downside to the pump is that it’s attached to the body — an inch-wide, 3-inch-diameter disc installed under the abdomen’s skin, below the waist line. The bump is visible on your body, and you may choose to wear different clothing to hide it. The Cleveland Clinic offers especially good information on the pump. Go to my.clevelandclinic.org, click on “medical devices,” and then on “intrathecal Baclofen pump.” WebMd has an easy-to-understand article on Baclofen at www.webmd.com/multiple-sclerosis/ intrathecal-baclofen-pump.

med alternatives

Cautious Exercise OK for MS As people who have had MS for a long time know, doctors used to caution that exercise would make their condition worse. But now we know that exercise helps to decrease fatigue, retain range of motion, help bowel and bladder function and more. But MS creates challenges to any exercise program, as too much could trigger the very symptoms it’s trying to alleviate. Trial and error is the best way to learn what you can handle. Some may be able to handle 30-minute gym workouts twice a week, and for others, gentle yoga or Tai Chi from a sitting position may be the best choice. Also, swimming is beneficial for people with MS. It’s recommended that people with MS find pools with water temps below 85 degrees, although some report they can swim in warmer pools, so this may be another place for trial-and-error. Anything that keeps you moving counts as exercise, whether it be walking the dog or even fishing. The im30

portant thing is to get some circulation going and work your muscles — every little bit helps. • The MS Association of America has quite a few articles on exercise and MS available by searching its website, www.msaa.org. • The MS Society has an excellent resource section on exercise available on its website, www.nationalms society.org, and many chapters run their own exercise programs. • The National Center on Physical Activity and Disability has a few sections on MS that may help you design an exercise program, although sometimes the papers are a bit egg-heady: www.ncpad.org • As part of the “Living Well with a Disability” movement, many centers for independent living are installing accessible gyms. Find your local CIL at www.ilru.org.

NEXT ISSUE In this issue’s MS Perspectives, Sue Carloni shares about using a scooter for the first time. What did you experience the first time you used a new piece of equipment, be it cane, walker or wheelchair? Send your answers to Josie Byzek, Jbyzek@unitedspinal.org or call her at 718.803.3782 ext.7226.

l i f e i n a c t i o n • S E P TE M B E R / OCTO B E R 2 0 1 1

Members Respond Q. I don’t have the use of my legs due to MS and would like to know from other women in my situation how they transfer to the commode. Also, what do they do with all their clothes, be they slacks or a skirt? Nancy Beeler, Homewood, Ill. I have an indwelling cath, so urine’s not a problem, but I try to take care of any business with my bowels in the morning. Then my next door neighbor comes over and helps me. I get my jeans up to my knees and she helps with the rest. If I have to go another time during the day, I have to call and ask my neighbor to come over. A lot of people in my situation would wear skirts, but I wear long pants to cover my leg bag. I have very few human contacts during the day anymore. When you’re disabled in a wheelchair you can’t go to friends’ houses, and you know how that goes. Sometimes if it’s late afternoon or early evening, I’ll get my business done, and just pull my pants up enough to cover my legs or not do it at all. It’s awkward, but if you’re not expecting anyone you can do that — but it’s an unfortunate way to live. That’s how I’ve solved the problem. Cheri Ahrens, Fair Grove, Mich. I have a raised toilet and grab bars at home. But out in public, like on days I get my Tysabri infusion, it’s harder. I don’t drink anything because I don’t want to have to go to the bathroom. But if I have to, I get someone to stand guard, get the all-clear and have my husband come in with me. I need him to help because my feet don’t move. If he just lets me get to a handrail I can get in there and take care of business, but I can’t get back in the chair because it has a footrest. So he has to help. Evelyn Bennett, Nashville, Tenn. I use a small Pride scooter because the seat turns sideways and I can take it into the smallest bathrooms. At home, I have a sliding board but I don’t use it. Instead I put lotion on my hiney and on the commode seat, and then I slide easily. Also, I stopped wearing slacks and underpants a long time ago. I wore them all my life but not in the past 10 to 15 years. I roll my skirt up and hold it in my mouth while I slide onto the commode, and then I do the same thing when I get off the commode. It works just beautifully for me. Also, for urine, I use Kotex pads, or whatever’s the cheapest, and just put them between my legs. They don’t fall in the commode, they fall on the seat, and that helps tremendously. And I use a man’s urinal. It’s smaller than a woman’s urinal. I keep one on my bed side and carry it in my knitting bag, and people think it’s my knitting.

MS Perspectives research news

scooters away Sue Carloni

If the White House receives 5,000 signatures on a petition asking the National Institutes of Health to fund a clinical trial of low-dose naltrexone by Oct. 22, there’s a good chance such a study will eventually be funded. To sign on, go to http://wh.gov/gZa. This petition is part of the We The People initiative of the Obama administration that aims to respond to any issue that can attract 5,000 signatures. Many people with MS who take LDN say it’s the only drug that’s helped them. Plus, it’s inexpensive — unlike self-injectible treatments that can cost well over $30,000 a year. “I take one small capsule a day and I stopped having physical fatigue and started having more mental clarity,” says Ronnie Ellen Raymond, a United Spinal board member who’s had MS for over 20 years. “These are ‘side effects.’ My reason for taking the drug was trying to stop the Raymond progress of my disability. I may never know if it did that, but the [positive] side effects were from day one. I believe the cost is still less than $1 a pill.” Naltrexone is approved by the FDA for people rehabilitating from addictions, but it is used “off-label” at about one-tenth of the dose for immune-related disorders like MS. For more information on LDN, visit www. LDNaware.org and www.LDNinfo.org. For a first-person journal by Julie Stachowiak, a woman with MS who has been trying LDN, go to http://ms.about.com/b/.

New CCSVI Study CCSVI, shorthand for chronic cerebrospinal venous insufficiency, has just cleared another scientific hurdle. A new study in the Sept. 8 issue of Phlebology found that a large percentage of people with MS have “flow abnormalities.” The study, entitled “Morphological and Haemodynamic Abnormalities in the Jugular Veins of Patients with Multiple Sclerosis,” compared 64 people with MS to 37 people without MS and found that 42 percent of those with MS showed signs of CCSVI, as compared to 8 percent of those without. CCSVI researchers hypothesize that MS may be caused by compromised blood flow in the veins draining the central nervous system. This theory holds that CCSVI leaves behind iron deposits, which may create MS lesions. Some people with MS have sought what’s called the “Liberation Treatment” for CCSVI, which means they’ve undergone a form of angioplasty to increase flow in the compromised veins. Results have been mixed, with some experiencing immediate relief, and some having no changes to their MS whatsoever.

he day I bought my electric three-wheel scooter, I was so excited over the new mobility it offered me that I barely listened to the salesman’s instructions. I climbed aboard and sped toward the door, with my husband, Kurt, lagging behind. Since my diagnosis of multiple sclerosis a year and a half earlier, I had avoided going places where I could no longer walk the distances using just my cane. Now that I had an electric scooter, I was free to go wherever I pleased. Soon after my purchase, Kurt suggested we go to the new boat exhibit. “Why not?” I thought. “It’ll give me a chance to try out my scooter.” Because of the crowds, I had to travel through the aisles at turtle speed rather than rabbit speed. And seated so low, I couldn’t see the exhibits very well. I started to feel discouraged. When we got to the newest model of our 8-year-old water-ski boat, I wanted to get a closer look. I edged the front of my scooter to the side of the boat, but it was up on a trailer, so I still could not see inside. Feeling a bit jealous that Kurt could climb aboard for a better look, I stood up and placed my hands on the side of the boat. As I leaned forward, my leg pressed against the reverse lever on my scooter and I slowly became stretched out — hands clinging to the boat, feet far behind me on the scooter platform, my body draped over the handlebars. “Help!” I cried. The salesman rushed over and held me with one hand while pressing the forward lever with the other to free me from my outstretched position. Embarrassed, but grateful, I thanked him, then asked, “How did you know what to do?” “My sister has MS and uses one of these things,” he said. “I had to rescue her once, too.” “I just got this scooter, and I’m not used to it,” I explained.

Illustration by Rus Wooton

LDN Petition Needs Sigs Now

“Didn’t the salesperson tell you to turn off the key whenever you stop?” I vaguely remembered something to that effect, but at the time I thought the purpose was to save wear on the battery. Now I realized the key should be turned off for safety reasons. I learned a valuable lesson that day: Listen carefully to instructions regarding new mobility equipment, especially if the equipment can move much quicker than I can. Sue Carloni is a freelance writer who lives with her husband, Kurt, in Oconomowoc, Wis. She was diagnosed with MS in 1989 and is a member of the United Spinal Association. She has been published in 40 magazines, including Real Living With MS, Accent on Living, Sharing the Victory, Woman’s World, Complete Woman, Lutheran Woman Today and Wisconsin (National MS Society). Send your MS Perspective (500 words) and photo to jbyzek@unitedspinal.org.

S E P TE M B E R / OCTO B E R 2 0 1 1 • l i f e i n a c t i o n

solutions

SCI Research and Clinical Trials

By Tom Scott

Breakthrough in Purifying Stem Cells for Transplant

Redefining Cure How Human Trials and Revitalized Research are Changing the Future of Functional Return

life beyond wheels

cure

̇ noun \ˈkyur\ Definition of CURE some a : recovery or relief from a disease or injury

newmobility.com

MAR 2011 $4

NEW MOBILITY’S 2011 CURE UPDATE The March 2011 issue of New Mobility covered “Redefining Cure,” delving into the current state of neuroscience and human trials. Read it online at www.newmobility.com.

Developmental Neurobiology at Scripps, the team found that some lectins — plant-produced proteins — bind to specific combinations of sugars and proteins called glycoproteins on the surface of stem cells. They were able to exploit this connection to purify cell mixtures. “When we discovered there was a specific binding pattern, we decided we should just go for it and see whether we could use the lectins to purify cells,” says Yu-Chieh Wang, Scripps researcher and the first author of an article published on the subject in the journal Cell Research. “We tested the idea and it works very well, and lectins are readily available and inexpensive.” “At the more basic research level, because all the different stem cell lines from both humans and animals seem to produce similar glycoproteins binding to the lectins, it is possible these glycoproteins infer some basic qualities fundamental to the pluripotent state,” says Loring. Loring and her colleagues are exploring this possibility in hopes of better understanding stem cells’ still-mysterious abilities to transform into any type of cell. According to Loring, Scripps is initiating collaborations with researchers interested in their methods for a variety of cell types. “I think that safety is the major issue we need to deal with to make sure that no one is harmed by stem cell therapies. I hope that our methods are incorporated into the safety pipeline for transplant,” Loring says. This caution is understandable, as stem cell-based studies have received their share of negative publicity. In 2002, researchers from Sheba Medical Center in Tel Aviv discovered tumors growing on the spinal cord of a 13-year-old boy with a rare childhood neurological disorder — who had been injected on three occasions with neural stem cells from aborted fetuses at a Moscow clinic. The research community was in an uproar and warned of the dangers of unregulated and unscientific treatments. In 2006, Researcher Steven Goldman and colleagues from the University of Rochester found that while transplanting

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

embryonic stem cells into people with Parkinson’s disease could dramatically improve function, it may also cause the development of brain tumors, as seen in analogous rat studies. “In Goldman’s work [with rats], the transplanted cells included neural stem cells that continued to divide. It’s relatively easy to get rid of those cells before transplant, and other researchers haven’t

bryonic stem cell clinical trial came in 2009, a little more than 10 years after the first human embryonic stem cells were isolated at the University of Wisconsin, in work financed by Geron. The trial, funded by Geron, a Californiabased biotechnology company, will involve 8-10 people with complete spinal cord injuries. The first participant was enrolled in 2010 at Shepherd Center, a

Photo by David Bundy/The Washington Post/Getty Images

uch has been reported on the potential of stem cell-based therapies for treating spinal cord injuries and disorders such as Lou Gehrig’s disease. There are concerns, however, about scientific evidence pointing to the risk of tumors developing in people transplanted with these cells. One dilemma researchers have encountered during their investigations into stem cell transplantation is how to isolate pure human “pluripotent” stem cells from undifferentiated, impure cells that may cause noncancerous tumors called “teratomas.” To address this, researchers have focused on creating antibodies that can selectively destroy impure stem cells in mixtures — an often expensive and delicate undertaking, as the antibodies are produced from animals. Now, a team of scientists at Scripps Research Institute — an independent, nonprofit biomedical research organization — working with colleagues in Japan, may have found an easier, less expensive solution. Led by Jeanne Loring, professor of

Timothy J. Atchison (pictured with his sister, Alyssa McDonald) was the first person to receive an injection of embryonic stem cells as part of Geron’s clinical trial on their effectiveness for treating spinal cord injuries. The 21-year-old nursing student from Chatom, Ala., received the injection last September after a complete T7 injury from a car accident. Six months after the treatment, Atchison said he thought he was regaining some sensation. He told the Washington Post: “I think [the treatment] will help me. I’ll keep riding my bike and exercising. ... You just want to let the stem cells see what they can do.”

seen this problem. That doesn’t lessen the significance, though,” explains Loring. “There is a great need for quality control in preparing stem cells for transplantation. The quality control measures should include DNA analysis as well as purification methods like the one that we developed at Scripps.” The FDA has taken a cautious approach to approving embryonic stem cellbased clinical trials — unfamiliar territory for the regulatory agency. One key component of their regulatory standards is to ensure the purity and safety of the cell or tissue product to be transplanted. The first FDA approval for an em-

spinal cord and brain injury rehabilitation hospital and clinical research center in Atlanta, Ga. It’s one of seven potential facilities in the U.S. that can enroll people for the trial. When asked what methods Geron plans to use to purify stem cells for transplant in their study participants, Loring explains, “They haven’t divulged their methods, and now that the cells are in trials they can’t change their preparation and quality control methods. But I’m in touch with the scientists there about trying our approach in development of quality control for future stem cell transplant applications.”

Ask VetsFirst Q. What is a DD-214 and how can I get a copy?

VetsFirst Responds If you ever wanted to have a record of your military career or the career of a loved one, the DD214 is the document you’ve been looking for. Officially known as a “Certificate of Release of Discharge from Active Duty,” the DD-214 is usually issued to service members when they are separated or discharged from the military, but if you lost yours or want to get one for a family member, there are other ways to obtain it. Before we get to that, a little more about exactly what the DD-214 is and what it can do for you. In terms of function, imagine an academic transcript that summarizes your entire education — only focused on your military service and with much more detail. From the basics, like when and where you enlisted and left the service, to a record of medals, badges, citations and awards, to details on foreign service, total service, training and discharge information — the DD-214 hits the high points of a military career. The form can be used as proof of service in applying for jobs, securing discounts or other offers for veterans, or simply to recall your service time or that of a loved one. If you were not given a copy of your DD214, or you have lost your copy, you can obtain a duplicate from the National Archives and Records Administration (Archives). A DD-214 can be requested in a number of different ways. Perhaps the quickest and easiest is the Archives’ eVetRecs online military records request system. Through this system, located at www.archives.gov/veterans/military-servicerecords/, eligible individuals simply need to follow the on-screen instructions. If you do not have Internet access you can also make a request by mail or by fax. Although it is not mandatory, it is strongly recommended you make your request on a Standard Form (SF) 180. The SF 180 is available for download at www.archives.gov/research/order/standardform-180.pdf. If you are unable to obtain an electronic copy of an SF 180 you can request a copy be sent to you by mailing your request to National Personnel Records Center, 9700 Page Ave., St. Louis, MO 63132. The SF 180 form may also be available from Federal Information Centers, VA facilities and veterans service organizations such as VetsFirst, a program of United Spinal Association. Contact VetsFirst at www.vetsfirst.org or 718.803.3782.

SEPTEMBER/OCTOBER 2011 • LIFE IN ACTION

solutions

Travel: The Galapagos — on Wheels

By Ben Mattlin

o naturalists, scientists, historians, adventurers and just about everybody else, Ecuador’s Galapagos Islands are famous as a kind of land that time forgot. The protected area, home to creatures not found anywhere else on earth, is also where Charles Darwin formulated his theory of “natural selection” and later popularized the idea of “survival of the fittest.” But for those of us survivors who may not be the fittest — at least not in the classical sense — the Galapagos may sound impossibly inaccessible. No more. Ecuador For All, a travel agency based in Quito, has been making wheelchair-friendly Galapagos tours a reality for the past two years. “So far, our Galapagos tours have hosted approximately 20 people who use wheelchairs,” says Juan Francisco Marañon, the agency’s co-owner and general manager. Marañon is hopeful that a recent hotel redesign to increase access will lead to larger groups of wheelchair-using travelers. The level of accommodation his outfit provides depends somewhat on specific needs. Power chair users, for instance, might have difficulties. However, Marañon’s group will help you rent a manual wheelchair locally, if necessary. “At the moment, our guests will enjoy the tour more if they have full upper-body mobility,” acknowledges Marañon. Those who don’t, he says, might have a harder time doing some of the activities. “There are things they can do, such as observing many exotic animals, but they might not be able to do and see all the things,” he says. Among those more strenuous adventures, he cites snorkeling, aquatic excursions to see dolphins and whales, and the Pinnacle Rock volcano. Still, despite the limitations, the travel crew does its best to accommodate. “The trip overall was very wheelchair-friendly, due in part to the service provided,” says Norman Ward, a retired Army colonel and wheelchair user from Fort Belvoir, Va., who took the Galapagos trip in October 2010. “I was picked up by the guide each morning [and] he pushed me everywhere. He would’ve assisted me in transferring, but I didn’t need that.” Instead of relying on cruise ships, wheelchair-users are flown from the 34

Airline crew must help you up the steep staircase of the plane to and from San Cristobal.

mainland to the island of San Cristobal — a flight of less than two hours — where they spend three or four nights in an accessible hotel. On that one island, you can see sea lions, giant marine and land tortoises, marine iguanas, pelicans, crabs, bluefooted boobies and other rare birds. You can also visit the Charles Darwin Research Station, where you might see tiny newborn tortoises or the oldest surviving tortoise, known as Lonesome George. Those with adequate stamina can also fly from San Cristobal to Isabela Island — home to flamingos, penguins, rays, reef fish and white-tipped reef sharks — for an additional three days. The accessible hotel on San Cristobal offers wide, threshold-free sliding doors, bathroom grab bars and bath chairs, but no roll-in showers (the hotel on mainland Ecuador, however, has those). All meeting and eating areas are ramped. For rugged outdoor expeditions, special wheelchairs and assistants to maneuver

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

them are available. “We provide staff for all activities, including people to assist with wheelchairs,” says Marañon. Ward used the special “rough terrain” wheelchair “all the time,” he relates. “It had four long handles that were attached for short carries. A few places, the guide and a helper had to carry me in the wheelchair, for short distances. It felt like any other wheelchair, except for the handles.” There are even kayaks with grab bars and back-support seats for those who want to venture further out to observe sea creatures. “We normally transfer clients from their wheelchairs to the kayaks,” explains Marañon. “We send our staff to paddle, and we always have one free kayaker for security.” But Ward passed over the kayaks for a glass-bottom boat, primarily to be able to take better pictures. “We could see sea life as well as land life,” he explains. “Sea turtles on the bottom and schools of barracuda, for example.”

Norman Ward, above, enjoyed photographing the giant tortoises and other exotic wildlife on the Galapagos Islands. The rods extending from his chair were for the staff to pull him up hills and through rough terrain.

Marañon says Ecuador For All is always happy to “accommodate, change, and adapt to client requests. Just let us know your requirements before the tour, so we can take care of all details in advance.” One easy accommodation is the ability to go at your own pace. Private tours — as opposed to group outings — allow you to “set the speed,” says Marañon. Assistance is also available on the airplanes to and from San Cristobal — and chances are you’ll need it. The only way on or off the plane there is via a steep staircase. “Airline crew will lift the person down from [or up to] the plane,” he says. Prices for the Galapagos tour vary, depending on group size. Many visitors purchase a package deal that includes five days in the Amazonian forests. These involve small-plane and boat rides to see the majestic Andes Mountains; colorful wild parrots, macaws and toucans; tree-swinging spider monkeys and golden tamarins; giant otters frolicking in the creeks, and other awe-inspiring flora and fauna. For more information, visit Ecuador for All at www.ecuadorforall.com. If you would like help booking a trip, Able to Travel can make arrangements for NSCIA members for a $25 fee. Call 888.211.3635 or visit www.abletotravel.org.

Marketplace

It’s Your Community.

Free Manual Hoyer Lift. If you are interested and can make arrangements to pick it up, please call Antoinette @ 631.665.4050 – New York Two extra sets of rims & tires plus quick release axles $175 or best offer. Used Max Pro Cushion $25 or best offer. Brand New Max Pro Cushion listed for $500, selling for $150 or best offer. Easy Lock $75 or best offer. 2 24” NEW Spinergy Wheels $120. 2003 Suzuki Motorcycle with side car adaptive for wheelchair user, electric lift gate, brand new motor, and electric shift $19,500 or best offer. Several different automotive hand controls $150 each or best offer. If interested please call John @ 609.587.0384 – New Jersey 1988 Ford 350E – 106,000 Miles, Raised Roof, Lowered Floor, Braun Lift, VCR & TV, FM Radio, Brand new tires, Full Insurance till October 2011, Cost $5,000. Power Hoyer Lift with Scale, cost $1,000. If interested please call John @ 757.471.1039 – Virginia High Back JAZZY #1100 Electric Wheel Chair. Approximately 7 years old — not used for last 4 years. EXCELLENT Condition, very clean, $900 O.B.O. Located in Central Florida. 352.365.0463. Practically brand new HS2800 C.T.M wheelchair for sale in Staten Island, New York. Only used twice. Asking $100-$200. Requires 2 new batteries. Must be picked up. Please contact Julianna @ 646.522.3927 or at juliannafarella@aol.com, 2000 Luxury Beaver Patriot Motor Home Immaculate, REALLY LOADED!!! ONLY 84,000 miles!!! LIKE NEW!!!! $90,000. WON’T LAST AT THIS PRICE!!! • 40’, ft., 2 slide outs, Caterpillar Diesel Pusher 3126B Truck Engine • Super Arm • Sat Dish • Tempurpedic Queen Master (Sleeps 4) • Roll-In Shower/HC Bathroom • Tracking System from Bed to Driver Seat • A.C., A.M/F.M./C.D. • Hand Controls • Vegia Tire Pressure Monitoring System • Digi-Pad Call or email for any additional information or questions!!! Cell: 951.218.4023 Ask for William Bussear. Email: wlb21666@ hotmail.com. Located in Texas. Life in Action accepts free person-toperson ads from members and paid ads from all others. Please call Megan at 718.803.3782, ext. 7253 for pricing or to place an ad.

Get Involved! National Spinal Cord Injury Association has more than 60 chapters and peer support groups nationwide. Individual membership is free and open to individuals with spinal cord injuries or disorders, family members, caregivers and professionals. Member benefits include: ѳ Connections to chapters and local resources ѳ Discounts on products & services ѳ Priority access to Spinal Cord Central ѳ Subscription to Life in Action ѳ Monthly e-newsletter ѳ Legislative alerts ѳ Peer support ѳ Much more!

Learn more or join at www.spinalcord.org or call 800-962-9629.

a program of United Spinal Association

SEPTEMBER/OCTOBER 2011 • LIFE IN ACTION

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Make sure to let us know you are a member! 36

LIA36-37R.indd 36

NSCIA Business Members If the businesses you patronize are on this list, please thank them for supporting you and your fellow NSCIA members. If they aren’t on this list – ask them to join today!

Gold Coloplast www.us.coloplast.com Invacare www.invacare.com Mobility Works www.mobilityworks.com Pride Mobility www.pridemobility.com Sunrise Medical www.sunrisemedical.com United Seating and Mobility www.unitedseating.com

Silver American Medical Direct www.americanmedicaldirect.com Care.com www.care.com Chesapeake Rehab Equipment www.chesrehab.com The ROHO Group www.therohogroup.com Synapse Biomedical www.synapsebiomedical.com Wilmington Medical Supply www.wilmingtonmedicalsupply.com

Bronze Advisacare www.advisacare.com Ameriglide www.ameriglide.com Delta www.delta.com Falvello Law Firm www.falvellolaw.com Free Wheel www.gofreewheel.com My Grip Solutions www.mygripsolutions.com My Pleasure www.mypleasure.com Scootaround www.scootaround.com TiLite www.tilite.com WYNG PRODUCTS www.wyngproducts.com Acknowledgements on our website, in Life in Action, in NSCIA e-news or any other United Spinal publication should not be considered as endorsements of any product or service. It is the individual’s responsibility to make his or her own evaluation of such.

www.spinalcord.org/business

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

10/5/11 11:48 AM

NSCIA Hospital Members Did You KNOW...

NSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders. Visit www.spinalcord.org for a full list of Hospital Members with links to their websites, and information on how your hospital can join NSCIA. CALIFORNIA Casa Colina Centers for Rehabilitation Pomona, CA, 909.596.7733 Northridge Hospital Medical Center Northridge, CA, 818.885.8500, Ext. 3669 COLORADO The Rocky Mountain Regional Spinal Injury System â&#x20AC;&#x201C; Craig Hospital Englewood, CO, 303.789.8306 WASHINGTON, D.C. National Capital Spinal Cord Injury Model System National Rehabilitation Hospital Washington, DC 202.877.1425; 202.877.1196 FLORIDA Broks Rehabilitation Hospital â&#x20AC;&#x201C; University of North Florida Jacksonville, FL, 904.858.7600 Pinecrest Rehabilitation Hospital (CARF) Delray Beach, FL, 561.495.0400 GEORGIA Georgia Regional Spinal Cord Injury Care System â&#x20AC;&#x201C; Shepherd Center, Inc. Atlanta, GA, 404.350.7591 ILLINOIS Memorial Medical Center Neuromuscular Sciences & Orthopedic Services Springfield, IL, 217.788.3000 INDIANA Rehabilitation Hospital of Indiana Indianapolis, IN, 317.329.2000 KENTUCKY Cardinal Hil Rehabilitation Hospital Lexington, KY, 859.254.5701 MARYLAND Adventist Rehabilitation Hospital of Maryland Rockville, MD, 240.864.6000 Johns Hopkins Hospital Baltimore, MD, 443.444.4700

Kennedy Krieger Institute Baltimore, MD, 443.923.9200

PENNSYLVANIA

Kernan Orthopedics and Rehabilitation Baltimore, MD, 888.453.7626

& Research

MASACHUSETTS New England Regional SCI Center at Boston Medical Center Boston, MA, 617.638.8000 MICHIGAN

UPMC Institute for Rehabilitation Pittsburgh, PA, 877.287.3422 The Wiliamsport Hospital and Medical Center Gibson Rehabilitation Center Williamsport, PA, 570.321.1000 SOUTH CAROLINA

Mary Freebed Rehabilitation Hospital Grand Rapids, MI, 616.242.0343

Healthsouth Rehabilitation Hospital

University of Michigan Model Spinal Cord Injury Care System Ann Arbor, MI, 734.763.0971

TENNESSEE

MISSOURI The Rehabilitation Institute of Kansas City Kansas City, MO, 816.751.7900

Columbia, SC, 803.254.7777

Tips On Interacting With People With Disabilities

Pa tricia Neal Rehabilitation Center Knoxville, TN, 865.541.3600 Understanding the (ADA) Americans with Disabilities Act

TEXAS Dallas, TX., 800.422.9567 TIRR Memorial Herman The Insti-

Madona Rehabilitation Hospital Lincoln, NE, 402.486.8296

Houston, TX, 713.799.5000

NEW JERSEY Northern New Jersey Spinal Cord Injury System Kessler Institute for Rehab West Orange, NJ, 973.243.6849 NEW YORK Mount Sinai Spinal Cord Injury Model System New York, NY, 212.659.8587

tute for Rehabilitation and Research) Texas Health Harris Methodist

Moses Cone Health System Greensboro, NC, 336.832.7000 Carolinas Rehabilitation Charlotte, NC, 704.355.4300 OHIO Northeast Ohio Regional Spinal Cord Injury System Cleveland, OH, 216.778.8781

A Publication of

Forth Worth, TX, 817.820.4800 VIRGINIA Inova Mount Vernon Hospital Alexandria, VA, 703.664.7592 WISCONSIN Froedert Memorial Lutheran Hospital Milwaukee, WI, 414.805.3000 * * *

NORTH CAROLINA J. Paul Sticht Center on Aging and Rehabilitation Winston.Salem, NC, 888.605.9568

Baylor Institute for Rehabilitation

NEBRASKA

Alegent Immanuel Rehabilitation Center Omaha, NE, 402.572.2121

DISABILITY ETIQUETTE

ORGANIZATIONAL MEMBERS OF NSCIA Florida SCI Resource Center St. Petersburg, FL, 866.313.2940 Project Walk Carlsbad, CA, 760.431.9789 Push to Walk Riverdale, NJ, 862.200.5848 Quest to Walk Overland Park, KS, 913.451.1500

United Spinal Association United Spinal Association produces more than 30 produces over thirty brochures and pamphlets brochures and pamphlets on subjects like Disability from subjects like Disability Etiquette, Fire Safety Etiquette to Fire Safety for for Wheelchair Users at Wheelchair Users at Work Work and Home, and and Home to Understanding Understanding the can ADA the ADA that you that youor can purchase purchase download for or download for FREEFor on FREE on our website? our website. For more more information visit information visit www.unitedspinal.org. www.unitedspinal.org.

SEPTEMBER/OCTOBER 2011 â&#x20AC;˘ LIFE IN ACTION

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Last Laugh

Refuge area “Warning: Do not approach, feed or harass the wildlife.”

“Accessible restrooms approximately half-size.”

“Free sombrero with every disability!”

“Service Horse Crossing.”

Caption Contests We held a few impromptu caption contests on Facebook (www.facebook.com/lifeinaction) and LOL’d at some suggestions. Send your funny photos, cartoons, captions or whatnot to lifeinaction@unitedspinal.org.

LIFE IN ACTION • SEPTEMBER/OCTOBER 2011

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